Happy Easter!!
Written Saturday morning, March 22:
Allen A Dale (in Robin Hood) sings, 'Life goes on and on...' and so it does. Isn't that wonderful!!
Stan's progress doesn't seem as dramatic to me these days as it did a couple of months ago....but Thursday was a biggie!!
The PT and OT were here working on him (with him) and had him up in his recliner (non reclined). We all noted how straight up he was
staying and how he held his head up (usually it is drooped over to the left). We even noted that once when he put his head down, he i
mmediately lifted it back up. I hated to put him back to bed because he looked so GOOD sitting there. But, the gal who comes twice a week
to bathe him was coming soon and her job doesn't work in the chair. So back to bed we put him....using the Hoyer lift, of course. He is all
squashed up in it, and is always relieved to be free of it when released! We lowered him to the bed and as we removed the loops from the
Hoyer that held his head, he didn't flop back on the bed. Instead, he stayed half sitting with his head up. When he did lie back on the bed,
he would lift his head up more than six inches off the bed!! He did this for us several times. This is a huge FIRST since before the stroke!!
He hasn't continued to lift it quite as far the last two days, but still has much more freedom of movement and does lift it more than two or
three inches up....also something he hadn't done since the stroke.
Maria, the OT, took a 3 day seminar last weekend...something to do with muscle release or relaxation. It is very NON invasive....and another
thing we noted that day....it was first time since he could talk again that he said his neck didn't hurt!!! So, I do have exciting news to share!!!
Another thing that visitors and our kids have noted....his speech is clearer AND not so repetitive. He talked to Uncle Don on the phone this week
for several minutes without repeating words. He still gets a bit fast, but he is using full LONG sentences and telling events very well. I forget that
this is an improvement because I am hearing it everyday.... But it is a big improvement just since he's been home!!
His left leg is doing a lot of 'jerking' that he insists is reflex action....but this is new, and is happening several times a day.....so I am hoping that it is
a good sign. His left hand wants to 'claw' but can be worked or massaged out of it....which we do several times a day. I took the ball away because
I didn't want him throwing it in the house and breaking something....but I am giving it back! He was doing such accurate aiming in the hospital, that it
would be good eye / hand coordination therapy!! I'll just move all the bottles of stuff, pictures, etc to behind him! TADA!!!
The therapists told me on Thursday that they may not be able to continue treating him after mid April because medicare only funds them for 60 day
increments. Stan has to show a marked progress toward a goal for them to be allowed a second 60 day period. The goal is totally unrealistic for a severe
stroke patient...but if we continue to work with him and he continues to progress, they will reassess him in a year and maybe be able to return.
Everyday I learn a little more about the 'rules' that the system demands. Another strange one is the 'pillow.' The PT brought this amazing air pillow....they
are pretty expensive but she has loaned him hers. She checked and found that medicare only pays for one for patients who have bedsores!!! I told her I was
not going to allow Stan to get a bed sore if I could help it!! She is working on getting me a 'deal' for one of the cushions. She said she would bargain for some
kind of a discount!! PTL When he sits on it in his chair he doesn't fuss about getting back into bed. It takes a lot of stress off his buttocks!! I'll have to take
a picture of it....and if I ever get my ability to scan back...I'll send it along for you to see.
Well....while Stan is progressing beautifully....I do believe I am 'regressing' badly!!! My driver's license expired on my birthday, but I didn't notice....so until
it was brought to my attention a couple of weeks later, I was driving illegally! I finally got to the DMV this week to get that corrected. I actually liked the
photo on my expired card, and since it was just taken about a year ago, I had hope to get the sticker for the back of my license. I was told they don't do
that anymore!! Everyone has to come in and have a new picture EACH renewal...and instead of ten years, they are now just good for five years. (Is this
a 9/11 thing???)
Of course, the new picture is not a good one!! Well, from there I went to Costco to renew that membership....and WANTED a new picture. The one on my
Costco card is a 'runaway winner' for the ugliest picture ever taken anywhere!!! But...NO.... no new photo....the card is just updated in the computer after
the fees are paid!! Where is the fairness in this world!!
Well....I was using a 'Stan sitter' so I could get this stuff done, and also was desparate to get to the post office with Easter packages for grandchildren
that live elsewhere. I ran out of time, so had to repeat the challenge the next day...Wednesday. Pete was doing the sitting and needed me home in time
for him to get to church. However, he didn't arrive until 2 p.m. and I didn't get out of the driveway until 2:30....so I was pretty rushed with what I needed to do.
I had to go to the IBEW pension office to prove Stan was still alive and receiving his pension etc. It's an every year thing, only this time HE couldn't go...and
it has to be signed in front of a notary... I had attempted to do this a month ago, but forgot to take the Power of Attorney with me.
I did that, and on my way to the post office I was going right past the Lake Otis Pharmacy so I decided to make a quick stop to check on the status of the
Texas catheter the church is buying for us!! Joe (the pharmacist) had said he would call me with info last Friday, but here it was Wednesday and I hadn't heard
from him. Well.... I hurried into the store, and as I entered I patted my pockets (something I do to check on my car key!!) but my pockets were empty!! As
the realization of what I must have done dawned on me, I uttered (almost under my breath) 'Oh no, Oh no!' A couple standing at the prescription window heard me,
and the man said, 'That doesn't sound very good.' I said I thought I'd locked my key in the car....and I ran out to check. OH YES! I had locked the car with the
key in the ignition AND the car was still running!!
Back in the pharmacy, the gal working there offered to call me a lock smith. Another customer said we should call a cab, because the locksmith charges $80 to
$100 and the cab charges $20 to $25. The couple who first noticed my delemma said he used to be a policeman (NC I think) and they always did it for free. So
the consensus was for me to first call the police for help. The pharmacy gal gave me the phone...she was hesitant to call the police. I was waiting for a phone
number and probably looked pretty stressed, because the lady of the 'first couple' said, 'I'll make the phone call for you.' She took the phone and called the police,
only to be told they can't do that, but that she should call a cab. While she was calling the cab, I had my conversation with Joe, AND asked him if he had a slim jim.
He didn't, but offered to look at the car....only I told him it was okay, that a cab was coming. At some point during the discussion about who to call, someone asked
me if I had another key. I said yes, but that my husband had a bad stroke and so no one was available to bring me the key.
I went outside to wait for the cab driver. Joe told me to wait inside where it was warm, but I was way OVER heated by now and outside felt good. The temperature
thing across the street said it was 29 degrees out!! And, NO, I wasn't wearing a coat....but trust me, I wasn't cold.
When the cab finally got there (about 20 minutes later) I told him that my car was running, too! He commented that that was great, because then he would just
have to touch the window and it would roll down. Later as he was using a wedge to pry the passenger door open a bit and put a wire throught the opening to grab
the door handle....I said, 'Were you just funning me?' He said, 'No, with the engine running there was a way to activate the automatic locks...but my locks are manual!!!'
He did get hold of the door handle, but they won't open even from the inside when locked.... So next he got hold of the window handle and managed to roll it down
an inch or so, got hold of the button...and VOILA! he opened the door. As soon as the door was opened, the lady of the 'first couple' was out the door like a shot,
and telling me that I wasn't paying for this, her husband was!! She told the cab driver to go inside and see the man with the cane, and he would pay him. I didn't
even get a chance to refuse her offer!! I could afford to pay for my own 'stupidity' but she would not allow it. Until then, I had held myself together quite admirably...but
the tears started flowing. I told her (amongst the hugs she was giving) that until she said that, I was 'okay,' but now I couldn't stop crying. What is with me...I
NEVER cry!! This is twice in a week!! The first time was frustration, this time was emotional due to unexpected love. And my angels were NOT done with me yet.
When I got to the post office, I had seven boxes to carry in. I was carefully stacking them on the hood of the car into a configuration that I could get hold of all
in one trip...when I noticed a couple leave the post office and walk past me to their car. We were parked about half a city block from the door...and I didn't want
anyone to feel obligated to help me AGAIN! so I made sure to not make any eye contact. I must have looked pathetic!! heehee I did manage to pick up all the
boxes and proceed to the door in one piece and very proud of my ability....but as I approached the door, I realized it was a 'pull to open' situation. Before I could
even think of a solution, I heard footsteps running, and here was the man from the couple, hurrying to open that door and the one inside the arctic entry, too!!!
Isn't God good to me!!!
I do begin to wonder what I'll do NEXT to require Him to show me how many wonderful people he has out there for me!!
We also received two phone calls this week from persons in the community who LOVE Stan, and had just heard of his stroke. He has had far more reaching
influence than even I knew. I knew that he was more than just a customer to his chiropractor and to his speciality wood store owner....but to hear their
testimony of what he means to them is really wonderful. I was told his chiropractor sat down and bawled when he heard. I was also told by both his office
gal and by the owner of the Hardwood store that they would do anything to help. (Amy said she would come sit with him so I could get out!! Dr. Como's office
said he would treat him anytime for free....etc.) I KNEW he was (IS) a wonderful person, but all the testimonies I've had from people whose lives he has touched
are amazing!!
He WILL walk again!! But we have a lot of work to do to help God with the miracle!! So please keep praying....
Love, M
It is now evening of the same day:
Laura, Sara, and Abigail came to visit....bringing some of her delicious rolls for me (I hinted!!) along with some ham and a beautiful plant. I was able to give
the girls their baskets and see them open them. They are growing into such lovely young ladies!!!
While they were here, Cory brought a beautiful arrangement he had made for an Easter gift to Stan from the church. He came in and visited with Stan
a little and I showed him how pretty my birthday arrangement still is....almost a month old now!! I love his arrangements!! While they were all here I showed
them how I get Stan back in bed from his recliner. (I had put him in the chair after breakfast so I could change his bedding. *By myself* until time to lower him into the chair...then I fetched Phil to help. ''''brag'''')
They were quite impressed with the pillow/cushion until I told them the cost!! Stan was in the chair for over five hours....much longer than any time to
date!!...and with NOT ONE complaint or plea to be back in bed!! That cushion is a miracle!
Brian came this evening to set up the computer for us to 'be at church' in the morning, but couldn't get our computer to comply. So Pete, who is at the
church building right now, as is Alex... is setting up his lap top and will bring it for us to use. Awwwwwwww...modern technology, the good, bad, and frustrating!!
Grace just arrived after taking Andy to work. She brought some of her little yummy cheese cakes...and Stan will be able to eat them, too! She and I are going
to sit him up on the side of the bed. Brian just finished the range of motion exercises with him, so he should be plenty ready to sleep tonight!!!
Phone calls from Nelda and Cheri made this still more a 'red letter' day. And Phil and Kacee doing my shopping was a huge help, even if he did get a HUGE
jar of Miracle Whip instead of a quart!
And so ends (or will in about 3 hours) another day in the life of the Anchorage Knowltons.
Sunday, March 23, 2008
Friday, March 14, 2008
Mar 14, 2008
Oh, Oh! I think I wrote a book!!! Sorry!
--------------------------------------------------------------------------------
From: orlaska@hotmail.com
To: orlaska@hotmail.com
Subject: another day in the life of....
Date: Thu, 13 Mar 2008 09:42:29 +0000
I'm back by popular demand
It seems to me that every day is similar to the one before, so I think there's not anything to write about...but that really isn't true.
Yesterday (Tuesday) was a disaster.........I had a major melt down...not something I do, and don't like to admit it... especially since it started in A STORE!!! And lasted almost all the way home. It was just a little thing, but broke this camel's back!! The straw consisted of a clerk charging me about $12 too much because an item double scanned or something. But when I pointed it out, instead of mending the problem, she sent me to customer service.............where there was a line ten people deep! It was HER mistake, but I was being punished!
I think I am a little tired, and it was time to renew Stan's prescriptions. Fortunately, Phil is on spring break so he could stay with Stan while I went to WalMart. I ws trying to be frugle, but have learned that I outsmarted myself! His meds cost almost $300 for co-pay when I brought him home from the hospital at Fred Meyer's...so I thought I'd try Wally's World. Surely that would be cheaper!! After being told..."ten minutes, and I'll call you"...waiting 25 minutes and asking "how much longer?".... being told "they're being bagged up right now, have a seat and I'll call you"..... another fifteen minutes, more asking.... discovering there were meds being filled that I no longer needed, one that he hadn't even been on since before the stroke, etc...getting that all straightened out and feeling pretty good that the final bill would be much lower than last time (since I wasn't even buying nearly as many items)..... finally getting checked out, and being told it would cost $389.00!!! HOW could this be??? A hundred dollars more than last time, but only 2/3 the amount of meds!! I refused the order, went to pay for my other items, and that is where the Customer service came in....with ten people in line!!
Our drive way is a sheet of ice with a touch of melted water on top of it.....so after I backed down ONCE, I wasn't too anxious to try my luck a second time.....SOOOOO... when I realized I had left my glasses in the house, I "determined in my heart" to get home before dark. (My "bad" eye doesn't do well with lights at night without a corrective lens.) That and all the delays at WalMart and knowing I was going to have to "sleep" on my problem all night, spend today (Wednesday) calling the doctor, pharmacy, and insurance company.... I just lost it! Maybe it was the knowledge that I would have no time for a Costco stop and that Polish Dog for dinner that got to me!!
I did make all the calls, got Stan's meds "reordered" this time from Fred's, and even had Andy wanting to pick them up for me so I wouldn't have to slide down our driveway! (I just remembered.... yesterday STARTED with a missing newspaper! That is NO WAY to start the day!)
When I priced the meds so I would know what to tell Andy to expect, I was told the antibiotic for Stan's mastoiditis would cost $296.60. I thought she meant the cost before insurance! She quoted me all the $30s, $7s, etc that I would be paying and kept saying $296.60 for the one. When I told her the last two times I filled that one it was $30 each time. She told me to check with my insurance company. She couldn't do anything about it. Well, I called AARP....and got a royal education! Once Stan used $2500 up, the insurance put him in a new bracket. Until we reach $4050...we were on our own...full price!! Half of his meds full prices are in the one to three hundred plus dollar range. It will only take refilling them one more time to reach that $4050 goal. The good news then is that for the rest of the year, we will just be charged $5.60 or 5% of any med. It will start over again in January.... I am still having "sticker price" shock! But NOW I KNOW why WalMart's price was so high. So, MAYBE WallyWorld was a little cheaper in actual fact!! Oh well....I am now $426 poorer, and know that next time the bill will be full price for all the meds...easily reaching the $1550 amount that will put us back on the "cheap track." Wheeeeee!! I guess the lesson here is: DO NOT GET SERIOUSLY ILL!
I really can't complain, I've had very little to pay for all the time spent in the hospital. His bill at Regional for just the hospital, no doctors, was over a million!! Medicare and AARP have covered almost all of that! Then he had an equal time at St. Elias (only not CCU!) but he did have an MRI, CAT scan, and sonogram while there. And I was told they only charged what medicare pays. The multitude of specialists involved have so far sent bills that say pay 0.00. So I can cope with $1550 one month of each year for meds, I guess. Sure makes me worry about those with no insurance, tho!
I think I am "too close" to Stan to notice the little changes that take place each day. I try to assess any improvement etc, but it takes a visitor that hasn't seen him for a while to exclaim about how good he is doing.
I have found that I can manuever the Hoyer lift by myself, and keep him quite comfortable while doing so. It is much easier to change his sheets, etc. with him OUT of the bed, so I have him "hanging around" while I do the job.
The therapists have had him in the wheel chair (and we wheeled him to the open front door so he could see the snow!). Yesterday (before I went to the store) there were two here together. They had him sitting on the edge of the bed. He can't balance himself when he is trying to, but when we would distract him...like having him pet the cat....he would sit without us holding him up. The plan here is to get those trunk muscles stronger. Remember, he hasn't used them for four months.
Today (Wednesday) the speech therapist and I got him lifted over into his recliner, and he worked with her quite well. Often he is too tired and falls asleep while she is trying to get him to do things. It really is interesting. She brought electrical wire (thought he'd get a kick out of that) that she strung across the room over him. She had wooden beads about the size of a quarter that he had to move with his good hand as far to the left as he could. ...one bead at a time, unless she told him otherwise. He has a tendency to "follow orders" immediately when she tells him something. Except she is trying to slow down the fast speech, and the impulsive movements, so he isn't supposed to DO what she says until she says "START." She had a sock, the tv remote, his glasses, a pencil, and a wash cloth on a lap table and told him to put the wash cloth on his glasses and then the pencil on top of them. He started doing it before she even finished talking. She stopped him and reminded him she hadn't said "start" yet... He stopped and waited and did a great job. It is fascinating the simple little "tricks" she uses to exercise his mind and his sight.
Phil and KaCee ordered pizza delivered last night from Dominoes, and today Grace made homemade pizza and they came in for a visit. She was wonderful working on his range of motion exercises. He dearly loves having Luke and Cannon around.
And so goes our days..... washing, feeding, changing, crushing meds, running the washing machine and dryer and dish washer, and "entertaining" the influx of Home Health personnel that come on a regular basis five days a week. (This is in addition to regular house work. My windows are becoming opaque!!)
Will I ever sew again?? More to the point, will Stan ever walk again?? That is our most important goal that we are striving for. God has blessed us so much, that I certainly am NOT doubting ....
All in all, this should be an encouraging report. He is a good patient....but a noisy one. He makes lots of noises, but they are a joy to my ears after how many weeks of NO sounds coming from him!!!
(Hmmm, did you know if you get your right hand off by one key when typing that "I have..." becomes "U gave..."? Okay, I guess it is more than just the right hand goofing off here...since that g is typed with the left hand!!) (Just a little trivia for your enjoyment and edification.)
I think I was starting to say, "I have received many helpful hints on making Stan more comfortable." when that little "U gave" topic appeared on my screen and got me off the subject! Sorry...
Everything from carrot juice, flax seed oil, Texas cathetars, and memory mattresses! Thank you all.... How can we not succeed when God has provided us with so many loving friends!!! Two of you told me about vegetable oil on the syringe...and VOILA! What a difference....sure makes feeding time much much easier!
We love you all and thank you so much for being there for us...whether it is a helpful idea or an encouraging word.... We FEEL your prayers, believe me!!
Love, M
p.s. Too often lately I am having to "say goodbye" to a loved one....one of the "downsides" to spending so much time in Tulsa. I made many friends, and it seems like one by one, their battles with that horrible disease are coming to an end.
P. P. S. Stan and I were rooting for Lance Mackey to win the Iditarod this year....and HE WON! He is a cancer survivor, and he did the "impossible" last year, by winning the Yukon Quest and the Iditarod back to back. The experts all said it couldn't be done. Then they said it was a fluke! So we thought it would be super if he "showed them" he could do it again. The "fun" part here is, his rival Jeff King had more dogs and a faster team this year and kept right on Lance's heels for a thousand miles. Jeff passed him once, and at least once slept with his feet on Lance's boots so it would wake him if Lance woke and decided to get going. BUT that fateful time in Elim, close to the finish... Lance knew to win he would have to stretch that lead from seven minutes to over an hour somehow. So he had his dogs all attended to and lay down to sleep when Jeff arrived. He lured Jeff into thinking it was safe to take a nap...but as soon as Jeff snored ONCE, Lance was up and on the trail. When Jeff woke half an hour later and still had to get his team harnessed up etc.... Lance was the winner unless something unforeseen happened. It didn't...and Lance once again showed that YOU COULD win the Yukon Quest and the Iditarod in one year. (They are both at least a thousand miles long, and only about ten days apart. ) Okay...I'm going to bed!!!
pps!!! Well, it is now late late Thursday night (3 a.m. Friday). Not sure why this hasn't been sent yet, but I thought I'd add today's activities before sending now. The day started about five, and seven, and .... then at 8 Deryl called about coming for a visit. I had gone back to bed for an hour from seven to eight, still needed a shower and to feed Stan bfst, nurse coming at 11, OT and PT at noon, and Judy (to bathe him) at 2. Kathy was coming at 3 to "whisk me away" for some girl time (and a couple of chores.) So Deryl is coming Friday! He said he had some great news for us, but would not give me a hint!! That, of course, is cruel and unusual punishment....everyone knows I am much too curious to be told to WAIT a full day for NEWS!!
It was a new nurse, and she had a hard time getting his INR taken, but it was a good number...2.0 for those that know these things. I do not like coumadin, and he is still on five mg per day.... The OT and PT worked with him together but didn't get him up this time. I guess I should tell you a "Funny" about their visit on Tuesday. The PT is kind of a "rough" diamond... and used a word (starts with S) that isn't something I like to hear. A few minutes later she used the word "kapish" (sp??) and I said, "Now that is a word Stan understands. I think he got it from my dad, and he often says it. But that S word is one we don't use in our house." I was laughing to hopefully take the "sting" out. It wasn't my intention to hurt her feelings, but I did want her to know it really isn't something to say around us. She took it well, apologized, and I don't think we'll have to hear it any more. I am almost positive it is the only time this house has "heard" the word. Or the cat.... I am pretty sure neither will repeat it!
Judy and I got Stan into the Hoyer lift while we changed the bedding. That thing is a miracle worker!!
Stan's regular doctor's office called to see how I made out this time with the purchase of the meds. The call came from a young man named Draper. When I told him that for some reason neither WalMart or Fred's filled the prescription for Nexium (acid reflux pill), and that I checked on the Protonix we have here .... the AR med he took before the stroke....but it said "DO NOT CRUSH...swallow whole" I was afraid to use it. He has to have it crushed, he cannot swallow a pill. So I asked if it was all right to just not get that one for a few days to see if he had any AR problems. I told him about the "new" cost of meds, and that Nexium costs over $300 for 30 pills. Draper told me they had some samples of Nexium that he would gather up for me!
Kathy came in time for us to get by the doctor's office in time to pick up the Nexium, and to get to the Lake Otis Pharmacy before they closed. There she asked for Joe.... She and he had already "met" over getting certain items to make mine and Stan's daily life much easier. There are a couple of things on the market that make putting in a cathetar unnecessary. Joe had a box (gross...144) of one item that he would sell us for a dollar each instead of the marked five dollar price. BUT... when we got there, he had actually sold them to a "glider plane" pilot that day. He thought Kathy had decided against them for the other item....a $76 clamp. But Kathy and I had discussed the clamp for daytime and the Texas cath for night. The pilot hadn't picked the box up yet, so Joe is going to talk him into just taking half the box and letting me have the rest. When he got his catalog out to order the additional supplies for the Texas Cath (tubes and bags) and I asked "how much" when he asked "how many"...Kathy told me that she was carrying a check from the church to pay for these things. I kept in control, but just barely..... I really don't like to cry, and especially NOT in front of anyone!! But the tears (this time not in frustration, but from love) were really trying to escape.
What "they" probably don't know.... these things will also save us several dollars every month, as they will eliminate the need for so many "Depends" and under pads.... that have cost in the short time Stan has been home around $200....and we brought several of each home from the hospitals. (You should have seen the bag of supplies we got just from his room at Regional before going to St. Elias! Once something was in his room, it couldn't be used for another patient.... but of course, this supply ran out rather quickly....so I got to check out WalMart and Fred's cost.)
We are so blessed.... and please don't worry. Right now we are able to "withstand" the cost. If this had happened a few years earlier, I don't know what we would have done. Our income is stable since Stan was already retired, and medicare actually pays more than our insurance would have. (It doesn't really seem "fair" but they only pay a fraction of the actual bill, and the doctors and hospitals cannot charge more than medicare allows. That is why so many doctors limit their medicare patients. It took me two days of calling to find someone willing to take Mom when she moved in with us. At that time I was VERY frustrated with medicare, but now I am thankful. Thankful, too, the way God DOES take care of us!! (I did find a real jewel for mom....she loved him. A little guy from Poland who went to visit his mother there 3 or 4 times a year...and treated mom like his own mother. I gave him Mom's adjustable cane for his mother when she could no longer use it. He happened to mention he hoped to get off work before the stores closed as he was leaving that night for Poland and wanted to get an adjustable cane!) I can't pronounce or spell his name....but we were certainly blessed to find him.
After our visits to the offices for the pills and "items," Kathy and I had to decide WHERE to eat. Phil was staying with Stan so I could have the evening "out." We indulged ourselves at the Lone Star steak house....and then went home to marvel over yet another gorgeous Alaska sunset!! The view from our house is so wonderful. It is my wish that everyone of you could see at least ONE of them from our windows!! Stan can actually see the sunset from his bed.... isn't that wonderful!!!
Now I am going BACK to bed.... I had just got up to change and adjust him, and decided it would be a good thing to get this sent!
Love (again!), M
--------------------------------------------------------------------------------
From: orlaska@hotmail.com
To: orlaska@hotmail.com
Subject: another day in the life of....
Date: Thu, 13 Mar 2008 09:42:29 +0000
I'm back by popular demand
It seems to me that every day is similar to the one before, so I think there's not anything to write about...but that really isn't true.
Yesterday (Tuesday) was a disaster.........I had a major melt down...not something I do, and don't like to admit it... especially since it started in A STORE!!! And lasted almost all the way home. It was just a little thing, but broke this camel's back!! The straw consisted of a clerk charging me about $12 too much because an item double scanned or something. But when I pointed it out, instead of mending the problem, she sent me to customer service.............where there was a line ten people deep! It was HER mistake, but I was being punished!
I think I am a little tired, and it was time to renew Stan's prescriptions. Fortunately, Phil is on spring break so he could stay with Stan while I went to WalMart. I ws trying to be frugle, but have learned that I outsmarted myself! His meds cost almost $300 for co-pay when I brought him home from the hospital at Fred Meyer's...so I thought I'd try Wally's World. Surely that would be cheaper!! After being told..."ten minutes, and I'll call you"...waiting 25 minutes and asking "how much longer?".... being told "they're being bagged up right now, have a seat and I'll call you"..... another fifteen minutes, more asking.... discovering there were meds being filled that I no longer needed, one that he hadn't even been on since before the stroke, etc...getting that all straightened out and feeling pretty good that the final bill would be much lower than last time (since I wasn't even buying nearly as many items)..... finally getting checked out, and being told it would cost $389.00!!! HOW could this be??? A hundred dollars more than last time, but only 2/3 the amount of meds!! I refused the order, went to pay for my other items, and that is where the Customer service came in....with ten people in line!!
Our drive way is a sheet of ice with a touch of melted water on top of it.....so after I backed down ONCE, I wasn't too anxious to try my luck a second time.....SOOOOO... when I realized I had left my glasses in the house, I "determined in my heart" to get home before dark. (My "bad" eye doesn't do well with lights at night without a corrective lens.) That and all the delays at WalMart and knowing I was going to have to "sleep" on my problem all night, spend today (Wednesday) calling the doctor, pharmacy, and insurance company.... I just lost it! Maybe it was the knowledge that I would have no time for a Costco stop and that Polish Dog for dinner that got to me!!
I did make all the calls, got Stan's meds "reordered" this time from Fred's, and even had Andy wanting to pick them up for me so I wouldn't have to slide down our driveway! (I just remembered.... yesterday STARTED with a missing newspaper! That is NO WAY to start the day!)
When I priced the meds so I would know what to tell Andy to expect, I was told the antibiotic for Stan's mastoiditis would cost $296.60. I thought she meant the cost before insurance! She quoted me all the $30s, $7s, etc that I would be paying and kept saying $296.60 for the one. When I told her the last two times I filled that one it was $30 each time. She told me to check with my insurance company. She couldn't do anything about it. Well, I called AARP....and got a royal education! Once Stan used $2500 up, the insurance put him in a new bracket. Until we reach $4050...we were on our own...full price!! Half of his meds full prices are in the one to three hundred plus dollar range. It will only take refilling them one more time to reach that $4050 goal. The good news then is that for the rest of the year, we will just be charged $5.60 or 5% of any med. It will start over again in January.... I am still having "sticker price" shock! But NOW I KNOW why WalMart's price was so high. So, MAYBE WallyWorld was a little cheaper in actual fact!! Oh well....I am now $426 poorer, and know that next time the bill will be full price for all the meds...easily reaching the $1550 amount that will put us back on the "cheap track." Wheeeeee!! I guess the lesson here is: DO NOT GET SERIOUSLY ILL!
I really can't complain, I've had very little to pay for all the time spent in the hospital. His bill at Regional for just the hospital, no doctors, was over a million!! Medicare and AARP have covered almost all of that! Then he had an equal time at St. Elias (only not CCU!) but he did have an MRI, CAT scan, and sonogram while there. And I was told they only charged what medicare pays. The multitude of specialists involved have so far sent bills that say pay 0.00. So I can cope with $1550 one month of each year for meds, I guess. Sure makes me worry about those with no insurance, tho!
I think I am "too close" to Stan to notice the little changes that take place each day. I try to assess any improvement etc, but it takes a visitor that hasn't seen him for a while to exclaim about how good he is doing.
I have found that I can manuever the Hoyer lift by myself, and keep him quite comfortable while doing so. It is much easier to change his sheets, etc. with him OUT of the bed, so I have him "hanging around" while I do the job.
The therapists have had him in the wheel chair (and we wheeled him to the open front door so he could see the snow!). Yesterday (before I went to the store) there were two here together. They had him sitting on the edge of the bed. He can't balance himself when he is trying to, but when we would distract him...like having him pet the cat....he would sit without us holding him up. The plan here is to get those trunk muscles stronger. Remember, he hasn't used them for four months.
Today (Wednesday) the speech therapist and I got him lifted over into his recliner, and he worked with her quite well. Often he is too tired and falls asleep while she is trying to get him to do things. It really is interesting. She brought electrical wire (thought he'd get a kick out of that) that she strung across the room over him. She had wooden beads about the size of a quarter that he had to move with his good hand as far to the left as he could. ...one bead at a time, unless she told him otherwise. He has a tendency to "follow orders" immediately when she tells him something. Except she is trying to slow down the fast speech, and the impulsive movements, so he isn't supposed to DO what she says until she says "START." She had a sock, the tv remote, his glasses, a pencil, and a wash cloth on a lap table and told him to put the wash cloth on his glasses and then the pencil on top of them. He started doing it before she even finished talking. She stopped him and reminded him she hadn't said "start" yet... He stopped and waited and did a great job. It is fascinating the simple little "tricks" she uses to exercise his mind and his sight.
Phil and KaCee ordered pizza delivered last night from Dominoes, and today Grace made homemade pizza and they came in for a visit. She was wonderful working on his range of motion exercises. He dearly loves having Luke and Cannon around.
And so goes our days..... washing, feeding, changing, crushing meds, running the washing machine and dryer and dish washer, and "entertaining" the influx of Home Health personnel that come on a regular basis five days a week. (This is in addition to regular house work. My windows are becoming opaque!!)
Will I ever sew again?? More to the point, will Stan ever walk again?? That is our most important goal that we are striving for. God has blessed us so much, that I certainly am NOT doubting ....
All in all, this should be an encouraging report. He is a good patient....but a noisy one. He makes lots of noises, but they are a joy to my ears after how many weeks of NO sounds coming from him!!!
(Hmmm, did you know if you get your right hand off by one key when typing that "I have..." becomes "U gave..."? Okay, I guess it is more than just the right hand goofing off here...since that g is typed with the left hand!!) (Just a little trivia for your enjoyment and edification.)
I think I was starting to say, "I have received many helpful hints on making Stan more comfortable." when that little "U gave" topic appeared on my screen and got me off the subject! Sorry...
Everything from carrot juice, flax seed oil, Texas cathetars, and memory mattresses! Thank you all.... How can we not succeed when God has provided us with so many loving friends!!! Two of you told me about vegetable oil on the syringe...and VOILA! What a difference....sure makes feeding time much much easier!
We love you all and thank you so much for being there for us...whether it is a helpful idea or an encouraging word.... We FEEL your prayers, believe me!!
Love, M
p.s. Too often lately I am having to "say goodbye" to a loved one....one of the "downsides" to spending so much time in Tulsa. I made many friends, and it seems like one by one, their battles with that horrible disease are coming to an end.
P. P. S. Stan and I were rooting for Lance Mackey to win the Iditarod this year....and HE WON! He is a cancer survivor, and he did the "impossible" last year, by winning the Yukon Quest and the Iditarod back to back. The experts all said it couldn't be done. Then they said it was a fluke! So we thought it would be super if he "showed them" he could do it again. The "fun" part here is, his rival Jeff King had more dogs and a faster team this year and kept right on Lance's heels for a thousand miles. Jeff passed him once, and at least once slept with his feet on Lance's boots so it would wake him if Lance woke and decided to get going. BUT that fateful time in Elim, close to the finish... Lance knew to win he would have to stretch that lead from seven minutes to over an hour somehow. So he had his dogs all attended to and lay down to sleep when Jeff arrived. He lured Jeff into thinking it was safe to take a nap...but as soon as Jeff snored ONCE, Lance was up and on the trail. When Jeff woke half an hour later and still had to get his team harnessed up etc.... Lance was the winner unless something unforeseen happened. It didn't...and Lance once again showed that YOU COULD win the Yukon Quest and the Iditarod in one year. (They are both at least a thousand miles long, and only about ten days apart. ) Okay...I'm going to bed!!!
pps!!! Well, it is now late late Thursday night (3 a.m. Friday). Not sure why this hasn't been sent yet, but I thought I'd add today's activities before sending now. The day started about five, and seven, and .... then at 8 Deryl called about coming for a visit. I had gone back to bed for an hour from seven to eight, still needed a shower and to feed Stan bfst, nurse coming at 11, OT and PT at noon, and Judy (to bathe him) at 2. Kathy was coming at 3 to "whisk me away" for some girl time (and a couple of chores.) So Deryl is coming Friday! He said he had some great news for us, but would not give me a hint!! That, of course, is cruel and unusual punishment....everyone knows I am much too curious to be told to WAIT a full day for NEWS!!
It was a new nurse, and she had a hard time getting his INR taken, but it was a good number...2.0 for those that know these things. I do not like coumadin, and he is still on five mg per day.... The OT and PT worked with him together but didn't get him up this time. I guess I should tell you a "Funny" about their visit on Tuesday. The PT is kind of a "rough" diamond... and used a word (starts with S) that isn't something I like to hear. A few minutes later she used the word "kapish" (sp??) and I said, "Now that is a word Stan understands. I think he got it from my dad, and he often says it. But that S word is one we don't use in our house." I was laughing to hopefully take the "sting" out. It wasn't my intention to hurt her feelings, but I did want her to know it really isn't something to say around us. She took it well, apologized, and I don't think we'll have to hear it any more. I am almost positive it is the only time this house has "heard" the word. Or the cat.... I am pretty sure neither will repeat it!
Judy and I got Stan into the Hoyer lift while we changed the bedding. That thing is a miracle worker!!
Stan's regular doctor's office called to see how I made out this time with the purchase of the meds. The call came from a young man named Draper. When I told him that for some reason neither WalMart or Fred's filled the prescription for Nexium (acid reflux pill), and that I checked on the Protonix we have here .... the AR med he took before the stroke....but it said "DO NOT CRUSH...swallow whole" I was afraid to use it. He has to have it crushed, he cannot swallow a pill. So I asked if it was all right to just not get that one for a few days to see if he had any AR problems. I told him about the "new" cost of meds, and that Nexium costs over $300 for 30 pills. Draper told me they had some samples of Nexium that he would gather up for me!
Kathy came in time for us to get by the doctor's office in time to pick up the Nexium, and to get to the Lake Otis Pharmacy before they closed. There she asked for Joe.... She and he had already "met" over getting certain items to make mine and Stan's daily life much easier. There are a couple of things on the market that make putting in a cathetar unnecessary. Joe had a box (gross...144) of one item that he would sell us for a dollar each instead of the marked five dollar price. BUT... when we got there, he had actually sold them to a "glider plane" pilot that day. He thought Kathy had decided against them for the other item....a $76 clamp. But Kathy and I had discussed the clamp for daytime and the Texas cath for night. The pilot hadn't picked the box up yet, so Joe is going to talk him into just taking half the box and letting me have the rest. When he got his catalog out to order the additional supplies for the Texas Cath (tubes and bags) and I asked "how much" when he asked "how many"...Kathy told me that she was carrying a check from the church to pay for these things. I kept in control, but just barely..... I really don't like to cry, and especially NOT in front of anyone!! But the tears (this time not in frustration, but from love) were really trying to escape.
What "they" probably don't know.... these things will also save us several dollars every month, as they will eliminate the need for so many "Depends" and under pads.... that have cost in the short time Stan has been home around $200....and we brought several of each home from the hospitals. (You should have seen the bag of supplies we got just from his room at Regional before going to St. Elias! Once something was in his room, it couldn't be used for another patient.... but of course, this supply ran out rather quickly....so I got to check out WalMart and Fred's cost.)
We are so blessed.... and please don't worry. Right now we are able to "withstand" the cost. If this had happened a few years earlier, I don't know what we would have done. Our income is stable since Stan was already retired, and medicare actually pays more than our insurance would have. (It doesn't really seem "fair" but they only pay a fraction of the actual bill, and the doctors and hospitals cannot charge more than medicare allows. That is why so many doctors limit their medicare patients. It took me two days of calling to find someone willing to take Mom when she moved in with us. At that time I was VERY frustrated with medicare, but now I am thankful. Thankful, too, the way God DOES take care of us!! (I did find a real jewel for mom....she loved him. A little guy from Poland who went to visit his mother there 3 or 4 times a year...and treated mom like his own mother. I gave him Mom's adjustable cane for his mother when she could no longer use it. He happened to mention he hoped to get off work before the stores closed as he was leaving that night for Poland and wanted to get an adjustable cane!) I can't pronounce or spell his name....but we were certainly blessed to find him.
After our visits to the offices for the pills and "items," Kathy and I had to decide WHERE to eat. Phil was staying with Stan so I could have the evening "out." We indulged ourselves at the Lone Star steak house....and then went home to marvel over yet another gorgeous Alaska sunset!! The view from our house is so wonderful. It is my wish that everyone of you could see at least ONE of them from our windows!! Stan can actually see the sunset from his bed.... isn't that wonderful!!!
Now I am going BACK to bed.... I had just got up to change and adjust him, and decided it would be a good thing to get this sent!
Love (again!), M
Saturday, March 1, 2008
Feb 26, 2008 Madeleine's Birthday!
WOW! It was may birthday....and WHAT A BIRTHDAY! Since I don't feel (or look ) my age, this one didn't count. Right?
It was a rough day for Stan. He was supposed to have two therapists come, and I was wishing I knew how to get hold of them to cancel. His prune juice etc was NOT working, but making him feel miserable with need. I had to listen to his discomfort all day, and it is very sad to not be able to do anything. Finally, about four with Pete and me doing what we could, he had enough success to settle down and enjoy the evening's company. I know that isn't a pleasant subject, but if this is an update and prayer request listing.... this was a bad day for us. (I was expecting several from church to come that evening and wanted the house to be a little more presentable. This is a house that has been neglected for over 3 months of my going to the hospital and now adjusting to a pretty rigorous schedule. Stan, in all his misery, was worried about me trying to clean house on my birthday!! What a guy!!) (The therapists got lost and /or delayed, so when they called to say they'd come later, I did cancel for the day. He was too exhausted for them to work with him.)
Some of the men have a regular Bible study on Tuesday evenings, as do the women, also. They asked if they could come include Stan in the Bible study, and I knew he would love that. The women decided to come and include me in theirs. So it was to be a really nice evening of fellowship and Bible study. Little did I know!!
I was expecting a few to come around 6:30. Andy, Grace, and kids were here and Grace was leaving to take Andy to work when someone announced that people were starting to arrive. I was in the kitchen with Ashley thinking I should have Grace go by Costco for me on her way back. Ashley ran to catch her while I got my debit and Costco cards for her. I started down the stairs hoping to still catch her, when to my surprise the entry was FULL of people, all carrying food and gifts. I think they may have been shouting SURPRISE! They sang Happy Birthday! To this day, I don't think I know for sure who all was here. I took pictures around, but didn't get back downstairs until the end. I thought I saw John Brewer, but he isn't in my photos... Stan said he WAS here. I wonder who else I may have missed. Stan says there were 100 people here, I said about 50, but I think it was really more like 30... and there were those who couldn't come but sent cards! I do wish my scanner and my brain worked together with this computer. I would email you a picture of my cake. It was adorable!!! A very HAPPY cake.
There were veggies and dips, cheese cake, and Dreyers ice cream (the only kind I eat! I know I'm fussy, but why eat a dessert you don't like??? This is my father in law's fault. I didn't use to eat ice cream at all, until he brought home some EXPENSIVE brand once!! I am hooked on Dreyers vanilla! YUM) And Rick E replenished my fresh pineapple supply! I do love it!! The day before, Mandy and Jeff had brought me over an early birthday cake, so I really was well feted this b'day!
The bouquets!! I took their pictures.... they are all so pretty. And the array of other items, all geared to make me feel special. (It worked!!! thank you all so much.)
Stan was very touched by it all, too. He had been mentioning my birthday everytime someone asked him the date. (His therapists do this regularly to check his awareness. As soon as he heard FEBRUARY, he has been saying, "the 26th is my wife's birthday." (Maybe his memory is TOO good!!)
After all the eating and visiting, we did have a Bible study and prayer time. I am so very blessed!!!
It is now Thursday evening, and the days are pretty settled into our busy routine....of Home Health visits, meds, feedings, changing, washing bedding, etc. So help me, if I don't benefit from all these trips up and down stairs by losing some weight...there is NO justice.
Prayer needs (besides asking for prune juice provided relief) are relief for Stan's neck pain and for his left arm and leg to recover and his left side vision (both eyes) to improve. I am told that this phenomena causes him to "think" he is upright, when in reality he is leaning toward the left. He has "blank or black" areas in his vision as the left side of each eye is impaired. A prayer request for me is that I will be able to keep him free from bed sores and infections.
Thank you all so much!!!
May God bless you richly for your continued care and prayers on our behalf!
Love, M
It was a rough day for Stan. He was supposed to have two therapists come, and I was wishing I knew how to get hold of them to cancel. His prune juice etc was NOT working, but making him feel miserable with need. I had to listen to his discomfort all day, and it is very sad to not be able to do anything. Finally, about four with Pete and me doing what we could, he had enough success to settle down and enjoy the evening's company. I know that isn't a pleasant subject, but if this is an update and prayer request listing.... this was a bad day for us. (I was expecting several from church to come that evening and wanted the house to be a little more presentable. This is a house that has been neglected for over 3 months of my going to the hospital and now adjusting to a pretty rigorous schedule. Stan, in all his misery, was worried about me trying to clean house on my birthday!! What a guy!!) (The therapists got lost and /or delayed, so when they called to say they'd come later, I did cancel for the day. He was too exhausted for them to work with him.)
Some of the men have a regular Bible study on Tuesday evenings, as do the women, also. They asked if they could come include Stan in the Bible study, and I knew he would love that. The women decided to come and include me in theirs. So it was to be a really nice evening of fellowship and Bible study. Little did I know!!
I was expecting a few to come around 6:30. Andy, Grace, and kids were here and Grace was leaving to take Andy to work when someone announced that people were starting to arrive. I was in the kitchen with Ashley thinking I should have Grace go by Costco for me on her way back. Ashley ran to catch her while I got my debit and Costco cards for her. I started down the stairs hoping to still catch her, when to my surprise the entry was FULL of people, all carrying food and gifts. I think they may have been shouting SURPRISE! They sang Happy Birthday! To this day, I don't think I know for sure who all was here. I took pictures around, but didn't get back downstairs until the end. I thought I saw John Brewer, but he isn't in my photos... Stan said he WAS here. I wonder who else I may have missed. Stan says there were 100 people here, I said about 50, but I think it was really more like 30... and there were those who couldn't come but sent cards! I do wish my scanner and my brain worked together with this computer. I would email you a picture of my cake. It was adorable!!! A very HAPPY cake.
There were veggies and dips, cheese cake, and Dreyers ice cream (the only kind I eat! I know I'm fussy, but why eat a dessert you don't like??? This is my father in law's fault. I didn't use to eat ice cream at all, until he brought home some EXPENSIVE brand once!! I am hooked on Dreyers vanilla! YUM) And Rick E replenished my fresh pineapple supply! I do love it!! The day before, Mandy and Jeff had brought me over an early birthday cake, so I really was well feted this b'day!
The bouquets!! I took their pictures.... they are all so pretty. And the array of other items, all geared to make me feel special. (It worked!!! thank you all so much.)
Stan was very touched by it all, too. He had been mentioning my birthday everytime someone asked him the date. (His therapists do this regularly to check his awareness. As soon as he heard FEBRUARY, he has been saying, "the 26th is my wife's birthday." (Maybe his memory is TOO good!!)
After all the eating and visiting, we did have a Bible study and prayer time. I am so very blessed!!!
It is now Thursday evening, and the days are pretty settled into our busy routine....of Home Health visits, meds, feedings, changing, washing bedding, etc. So help me, if I don't benefit from all these trips up and down stairs by losing some weight...there is NO justice.
Prayer needs (besides asking for prune juice provided relief) are relief for Stan's neck pain and for his left arm and leg to recover and his left side vision (both eyes) to improve. I am told that this phenomena causes him to "think" he is upright, when in reality he is leaning toward the left. He has "blank or black" areas in his vision as the left side of each eye is impaired. A prayer request for me is that I will be able to keep him free from bed sores and infections.
Thank you all so much!!!
May God bless you richly for your continued care and prayers on our behalf!
Love, M
Sunday, February 24, 2008
Feb 24, 2008
Hello again!! I hesitate to write too often now, as each day seems to be a carbon copy of the one before. Well, not really...but I thought there should be something to tell. So, lo and behold, I decided to be the "comic relief" for this update.
First, it is another beautiful day in paradise. Gorgeous blue sky sunshine that makes me want to go dig in the dirt.....except my dirt is still covered with snow and ice.
I really am busy....24/7.... that is quite a "number" but it really is a good picture of my time. So, just in case I have an extra minute or two, I have devised some interesting ways to use them.
First, I caught the vacuum beater bar in a fight with a throw rug....and they both "lost." The rug lost a long piece of yarn, and the vacuum lost its ability to run until the yarn was removed. This was my job....if I wanted to continue cleaning the floors. I used scissors, tweezers, screw drivers, whatever I could get my hands on....and did manage after a LOOOOOOOOOONG time, to make the appliance worthy of its hire again.
Not to be outdone, the dryer thought of something even more fun for me to do. Someone (I can't imagine how this happened!!) washed a disposable diaper and dried it, too. All was well until I went to empty the lint screen. It refused to give up its abundance of loot....I tugged. It held tight. I tugged, and eventually I came up with an EMPTY lint screen.... The dryer thought it had won the tug of war. The lint screen area was so full, I could not pry it loose. I had to find something (turns out the handiest thing that was narrow enough and sturdy enough for the job, was the crank for Stan's bed!!) I used it to pry open (gently, gently so as not to break anything) the area, and while holding it open (about an inch or less) I was able to get my fingers in and pull out the diaper remnants. It only took a dozen or so times of reaching in, readjusting the crank, etc...to finally make the dryer see it My Way....and so also be functionable again.
To give Stan his meds in his stomach tube, there is a syringe that I put the little opened pointed end into the glass of meds and pull them up into container...works just like any syringe. Only this one has a rubber end that seals the container as I pull it up. This rubber or something only lasts about two weeks....more like ONE week. Then it begins to be almost impossible to pull up or to push back down when I put the pointy end into Stan's tube. I, being rather practical or miserly, want to use it until it absolutely won't work any longer. Today was THAT DAY! I was pulling the meds up into the container when the rubber part came loose from the plunger/puller and so as I was pulling with all my might!!!! it now released with a suddenness that caused the glass of meds to explode all over........my jeans and shirt, the curtain and window, the rug, the cabinet, the recliner, the table...and therefore everything on the table including the adorable get well card Luke made Papa..... I not only had a major clean up project, but I had to start over with the meds....meaning dole out the correct doses of ten different meds, crush them up to a powder, mix them with water so they could go thru the syringe and Stan's tube....
The "good" thing was, I had NOT yet given him any of his morning meds, so I didn't have to wonder what and how much of what he had already got. Wheeee! THAT is a big big relief!!
(I did not ....do not.... use or even think a bad word!! Even tho Phil and Isaac might think otherwise!! If you've never heard about my "cussing" incident with them....well, it was like this:
We were leaving Applebee's parking lot one night a couple of years ago. The car ahead of me was taking too long to pull into the street, so I .... who always "reads" license plates...said, "Okay, ESL, let's go." Suddenly Phil is dramatically looking all around. I ask him what he is doing. He says, "I'm looking for the four white horses. When my mother starts cussing, it must be the apocolyse!" I have to "rerun" my thoughts to see what he thought I had said. Apparently, ESL sounded a bit "iffy." Isaac agreed...saying that he wasn't going to comment, just thought maybe I forgot he was in the car. )
So, my clothes have been changed, the rug has been scrubbed with rug cleaner, a towel, some peroxide, and another towel. The table, chair, etc have been wiped clean, but I still have the curtain, window, and window sill to clean. Since they are easily "out of sight, out of mind" I tended to forget until now that I still have some more of my mess to take care of. Ce L'vie!! I have found a few other fun things to do, but they weren't quite as messy as this was. Like forgetting to turn the lever and open the tube when administering meds once, and because the "old" thing was so hard to push sometimes, didn't realize this time was hard to push because it was sealed shut!!! I managed to push hard enough that I "blew the safety cap off" and spewed stuff out unto his bed. I bet I will find something even more entertaining for my next report!!
Katrina and Ashley came with Andy yesterday for a short visit. They spent the day selling hats for Kathy's husband John. It was a beautiful blue sky day for the beginning of the Fur Rhondy (Anchorage's winter time CARNIVAL). But it was still cold enough that the girls' hands got mighty cold. Katrina said it was hard to make change or write, etc. They'll be selling again next Saturday when the Iditarod starts.
Luke and Grace stayed home because that little Varmit has been running a pretty high fever for 3 or 4 days. Tomorrow he comes to the doctor unless he is way better.
Isaac celebrated his cousin Jake's b'day (and his dad's) by going to Hatcher Pass with Jake. I haven't seen him yet to know how he did. Pete did get them for church this morning.
Pete got a job, but now he needs to get a life.............(whee, some moms are never satisfied!!) He is running large equipment for a snow removal outfit. The first night on the job, the foreman had all the other employees come watch him operate the rubber tired back hoe. He's been working 16 to 20 hours a day since he started. I guess they were really behind the eight ball .... He has "built a mountain" of snow where they dump, where before they were just dumping with no "plan" and when they ran out of room, they'd find another lot to dump in. Or something like that. But I am worried about his lack of sleep. He did tell me that he gets to be the one to haul snow downtown for the start of the Iditarod. This always intrigues me.... snow is removed from the streets and then it is put back for the race. I would imagine that after the ceremonious start of the race, the streets have to be once again cleared of snow. Where else but in Alaska!! I still am amazed at the closeness of the "last frontier" and the big city life here. I remember one night going to the post office after work and then driving home... I had to stop for an airplane to cross the street in front of me near the post office, and then on my way up my road to home, I had to stop and wait for a couple of dog sleds to cross in front of me.
Dave M came from church with communion for Stan and me a little while ago. That is always nice. And I got to see Stan through Dave's eyes. Dave hadn't seen him for about 3 weeks, and he marveled when Stan rubbed his eye with his right hand. Dave said it was way better than the last time he saw him use it. So each day does bring improvement, but when I am right there each minute, I tend to not see it. PTL for each added strength.
The OT and I got Stan into the sling and moved him to the recliner by ourselves on Friday, and then Pete and I got him back to bed later.
Today, I had to call Angie for help to pull him up in bed so I could feed him. There were no guys available and when he scoots down in the bed, it bends in the wrong place for him to be sat up. This is a constant problem with anyone who is stuck in bed. That is why his head got hit in the hospital...he was being pulled up!!
Hopefully, any excitement in my future updates will be caused by Stan learning new things, and not by me trying to see what else I can make a mess with!!!
Love, M
First, it is another beautiful day in paradise. Gorgeous blue sky sunshine that makes me want to go dig in the dirt.....except my dirt is still covered with snow and ice.
I really am busy....24/7.... that is quite a "number" but it really is a good picture of my time. So, just in case I have an extra minute or two, I have devised some interesting ways to use them.
First, I caught the vacuum beater bar in a fight with a throw rug....and they both "lost." The rug lost a long piece of yarn, and the vacuum lost its ability to run until the yarn was removed. This was my job....if I wanted to continue cleaning the floors. I used scissors, tweezers, screw drivers, whatever I could get my hands on....and did manage after a LOOOOOOOOOONG time, to make the appliance worthy of its hire again.
Not to be outdone, the dryer thought of something even more fun for me to do. Someone (I can't imagine how this happened!!) washed a disposable diaper and dried it, too. All was well until I went to empty the lint screen. It refused to give up its abundance of loot....I tugged. It held tight. I tugged, and eventually I came up with an EMPTY lint screen.... The dryer thought it had won the tug of war. The lint screen area was so full, I could not pry it loose. I had to find something (turns out the handiest thing that was narrow enough and sturdy enough for the job, was the crank for Stan's bed!!) I used it to pry open (gently, gently so as not to break anything) the area, and while holding it open (about an inch or less) I was able to get my fingers in and pull out the diaper remnants. It only took a dozen or so times of reaching in, readjusting the crank, etc...to finally make the dryer see it My Way....and so also be functionable again.
To give Stan his meds in his stomach tube, there is a syringe that I put the little opened pointed end into the glass of meds and pull them up into container...works just like any syringe. Only this one has a rubber end that seals the container as I pull it up. This rubber or something only lasts about two weeks....more like ONE week. Then it begins to be almost impossible to pull up or to push back down when I put the pointy end into Stan's tube. I, being rather practical or miserly, want to use it until it absolutely won't work any longer. Today was THAT DAY! I was pulling the meds up into the container when the rubber part came loose from the plunger/puller and so as I was pulling with all my might!!!! it now released with a suddenness that caused the glass of meds to explode all over........my jeans and shirt, the curtain and window, the rug, the cabinet, the recliner, the table...and therefore everything on the table including the adorable get well card Luke made Papa..... I not only had a major clean up project, but I had to start over with the meds....meaning dole out the correct doses of ten different meds, crush them up to a powder, mix them with water so they could go thru the syringe and Stan's tube....
The "good" thing was, I had NOT yet given him any of his morning meds, so I didn't have to wonder what and how much of what he had already got. Wheeee! THAT is a big big relief!!
(I did not ....do not.... use or even think a bad word!! Even tho Phil and Isaac might think otherwise!! If you've never heard about my "cussing" incident with them....well, it was like this:
We were leaving Applebee's parking lot one night a couple of years ago. The car ahead of me was taking too long to pull into the street, so I .... who always "reads" license plates...said, "Okay, ESL, let's go." Suddenly Phil is dramatically looking all around. I ask him what he is doing. He says, "I'm looking for the four white horses. When my mother starts cussing, it must be the apocolyse!" I have to "rerun" my thoughts to see what he thought I had said. Apparently, ESL sounded a bit "iffy." Isaac agreed...saying that he wasn't going to comment, just thought maybe I forgot he was in the car. )
So, my clothes have been changed, the rug has been scrubbed with rug cleaner, a towel, some peroxide, and another towel. The table, chair, etc have been wiped clean, but I still have the curtain, window, and window sill to clean. Since they are easily "out of sight, out of mind" I tended to forget until now that I still have some more of my mess to take care of. Ce L'vie!! I have found a few other fun things to do, but they weren't quite as messy as this was. Like forgetting to turn the lever and open the tube when administering meds once, and because the "old" thing was so hard to push sometimes, didn't realize this time was hard to push because it was sealed shut!!! I managed to push hard enough that I "blew the safety cap off" and spewed stuff out unto his bed. I bet I will find something even more entertaining for my next report!!
Katrina and Ashley came with Andy yesterday for a short visit. They spent the day selling hats for Kathy's husband John. It was a beautiful blue sky day for the beginning of the Fur Rhondy (Anchorage's winter time CARNIVAL). But it was still cold enough that the girls' hands got mighty cold. Katrina said it was hard to make change or write, etc. They'll be selling again next Saturday when the Iditarod starts.
Luke and Grace stayed home because that little Varmit has been running a pretty high fever for 3 or 4 days. Tomorrow he comes to the doctor unless he is way better.
Isaac celebrated his cousin Jake's b'day (and his dad's) by going to Hatcher Pass with Jake. I haven't seen him yet to know how he did. Pete did get them for church this morning.
Pete got a job, but now he needs to get a life.............(whee, some moms are never satisfied!!) He is running large equipment for a snow removal outfit. The first night on the job, the foreman had all the other employees come watch him operate the rubber tired back hoe. He's been working 16 to 20 hours a day since he started. I guess they were really behind the eight ball .... He has "built a mountain" of snow where they dump, where before they were just dumping with no "plan" and when they ran out of room, they'd find another lot to dump in. Or something like that. But I am worried about his lack of sleep. He did tell me that he gets to be the one to haul snow downtown for the start of the Iditarod. This always intrigues me.... snow is removed from the streets and then it is put back for the race. I would imagine that after the ceremonious start of the race, the streets have to be once again cleared of snow. Where else but in Alaska!! I still am amazed at the closeness of the "last frontier" and the big city life here. I remember one night going to the post office after work and then driving home... I had to stop for an airplane to cross the street in front of me near the post office, and then on my way up my road to home, I had to stop and wait for a couple of dog sleds to cross in front of me.
Dave M came from church with communion for Stan and me a little while ago. That is always nice. And I got to see Stan through Dave's eyes. Dave hadn't seen him for about 3 weeks, and he marveled when Stan rubbed his eye with his right hand. Dave said it was way better than the last time he saw him use it. So each day does bring improvement, but when I am right there each minute, I tend to not see it. PTL for each added strength.
The OT and I got Stan into the sling and moved him to the recliner by ourselves on Friday, and then Pete and I got him back to bed later.
Today, I had to call Angie for help to pull him up in bed so I could feed him. There were no guys available and when he scoots down in the bed, it bends in the wrong place for him to be sat up. This is a constant problem with anyone who is stuck in bed. That is why his head got hit in the hospital...he was being pulled up!!
Hopefully, any excitement in my future updates will be caused by Stan learning new things, and not by me trying to see what else I can make a mess with!!!
Love, M
Wednesday, February 20, 2008
update day 97
I just got word an hour ago that my sister, Jeanne, passed away. I am blessed to have had so much time to enjoy her even tho she was so ill during the past two years. I have so many fun and funny memories now!! My first visit to Tulsa while we were out walking we found a "critter" upside down. I scooped him right side up and onto the grass and took his picture. We thought he looked a lot like a scorpion only ...no stinger. Turns out it was a crawdad....but NO water near by. She and I were never brave enough to walk down thru the deep grass that went down to a creek behind the Center because we were fearful of the poisonous snakes that can lurk in those Oklahoma places. She told me Lane was braver and did explore that area.
We both enjoyed watching the fish in the clinic....and we were "regulars" at the pharmacy gift shop. I bought teddy bears and she bought fancy cards.
I was always very impressed with all the friends she made there. She was loved by everyone....doctors, nurses, caregivers and patients...and the cleaning crew and kitchen crew, and even the maintenence man was always willing to do her bidding.
Please pray for her husband and children.
Alaska, or at least my little section of it, turned a bit angry today....the wind and rain stormed around us all day long. The snow is now icey lumpy slush, and will be way worse after it freezes tonight. Forty degree weather in February is NOT nice here.
Things are "same-o, same-o" for Stan today. I did some exercises with him that the speech therapist left for me, and he did pretty good with them.
He isn't eating very well, and I don't know what to do. I end up putting a lot of his meals into the tube, but that is not what I want. He used to complain that they are too much work, but now he just gags and throws up, so it is impossible to "encourage" him to eat. I used to just feed him.....while others would let him get away with saying he didn't want something. But when he is gagging, coughing, and vomiting....it is kind of hard to "feed" him.
His left hand, arm, and leg haven't made any huge leaps yet, but let us continue in hope and encouragement!!
Thank you for your prayers!!
Love, M
We both enjoyed watching the fish in the clinic....and we were "regulars" at the pharmacy gift shop. I bought teddy bears and she bought fancy cards.
I was always very impressed with all the friends she made there. She was loved by everyone....doctors, nurses, caregivers and patients...and the cleaning crew and kitchen crew, and even the maintenence man was always willing to do her bidding.
Please pray for her husband and children.
Alaska, or at least my little section of it, turned a bit angry today....the wind and rain stormed around us all day long. The snow is now icey lumpy slush, and will be way worse after it freezes tonight. Forty degree weather in February is NOT nice here.
Things are "same-o, same-o" for Stan today. I did some exercises with him that the speech therapist left for me, and he did pretty good with them.
He isn't eating very well, and I don't know what to do. I end up putting a lot of his meals into the tube, but that is not what I want. He used to complain that they are too much work, but now he just gags and throws up, so it is impossible to "encourage" him to eat. I used to just feed him.....while others would let him get away with saying he didn't want something. But when he is gagging, coughing, and vomiting....it is kind of hard to "feed" him.
His left hand, arm, and leg haven't made any huge leaps yet, but let us continue in hope and encouragement!!
Thank you for your prayers!!
Love, M
Tuesday, February 19, 2008
Days 96 & 97
Altogether now!! Take a deep breath, let it out, and say: "I told you so!" (meaning all who told me to "get more rest before Stan came home....." I am so very tired.)
Maybe I'll quit counting the days now..... or just do a weekly update.... each day runs into another. (Listen to me, and it's only been one week.) There is always something going on....like today! Three different Home Health gals came. Nurse at 1:30 overlapped with aide at 2:15 who overlapped with speech therapist at 3. It makes for a busy day and a tiring one for Stan, especially.
Sunday I managed to change him a couple of times by myself...sheets and all....while the others were at church. In the afternoon, Brian, Angie, and Isaac stayed with Stan while I did some needed shopping and mailing. Phil and Pete took part in the church progressive dinner event. (Between Church and the dinner, we all worked together to accomplish a commode session. This was no simple task for anyone, least of all Stan.)
re: the mailing....(The valentine cards are sent, but I still have the last of the Christmas cards to mail. They are the ones that need letters inserted for my "old fashioned NON computer" friends. I still have friends who don't know about Stan because I don't have a letter writing program in this computer and don't seem to sit long enough to hand write them.)
One thing that may come out of all this.... Perhaps we can invent some appliances / furniture etc that will make life easier for others. Pete is insisting he will build a bed that makes turning Stan easier on him and on me. This is a major task and has given me a "permanent" backache. And even when it is two or three of us doing it, he cries out in pain. There has to be an easier, less invasive way!!
Did I tell you that the receptionist at Paul's Body Shop GAVE me her portable food processor? It works great. The first thing we pureed was a piece of taco pizza. Today I did some beef stew and it was like magic!! I have been putting his meds in baby food fruit and then in his tube. They seem to mix better into the fruit than into water and it flows through the tube just fine.
There are so many things I still have to learn. Supplies, for instance. I did find some much better pants and liners....bless WalMart!! I am hoping this will give my washing machine a rest.
Today I had to run to Carr's between the therapist leaving and dinnertime. It takes three of the smaller syringes each day for Stan's insulin, and we only initially bought two packs of ten. WalMart Pharmacy is closed on Sunday, so I failed to get any yesterday. Carrs told me that insurance might pay for them if I have a prescription, so I intend to get one. I have the prescriptions for the two kinds of insulin, so you would think that would mean I need syringes?? right!!
When Stan came home, one of his prescriptions was for a stool softener. Well...what was filled was gel caps that do not smash up, and he cannot swallow them...so as I think I already told you, we returned them and Fred's had to order it in liquid. Well... a tiny bottle that was a one day supply cost over ten dollars. I gave him less and made it last two days...but still a major expense. I asked Carrs if there was anything they had that was the same ingredient. Two of the pharmacists tried to find anything ... including calling other stores for information, but it seemed to "no avail." I got my syringes and went shopping for some groceries. Fortunately, I hadn't left the store yet, because I heard a page for the person requesting for Stan Knowlton please return to the pharmacy. They had found a generic bottle that is 473 ml (he takes 30ml per day) and it only costs $4.93!!! They only had one bottle but are ordering more for me. I truly thanked them for their extra effort to help me.
The wind howled for two nights, the snow is now mostly slush and ice. The Carr's parking lot required either a swim suit or hip waders to maneuver. In fact, I changed my first parking place for another because the water was so deep by my car door.
Pete seems to have inherited my penchant for bloody noses, and is having a terrible time getting his under control. He really hasn't been feeling up to par today after a really bad one.
Stan does love company, and for those of you close enough to come visit, please feel welcome to do so. It might be for your "convenience" to call first. We are "always" here (except for that rare case when I will have to take him to see a doctor....a task I dread and haven't figured out the how of, yet.) The inconvenient thing would be if you came during a Home Health visit....they are either checking his vitals, helping bathe him, doing exercises with him that require his input.... so you might want to miss coming while they are here. Otherwise, just come to the front door, and Stan is all set up right there! Like he says, "I'll be right here."
Everyday I find new things that are changed forever in my life. But at least ONE thing is now okay. While Stan was "sleeping" it seemed I discovered dozens of things I needed to ask, that only HE knew the answer to. At least now, he CAN answer them. And he does....his memory is fantastic. Pete needed an eyeglass repair kit today. He asked me where it would be, and since I don't do the repairs, I had no idea...........or rather, my IDEA was for him to ask his dad. He did...and BINGO! Stan knew. Andy said there were NO switch plate covers in the house (when they were getting the turret room ready for Stan.) I insisted there had to be....Stan piped up and told Andy exactly where to look. Someone still needs to write down his fudge recipe and directions. This is the first Christmas without it since he took over the job of making it more than 40 years ago. Little things... like eating a hot dog in Costco by myself instead of with him....and thinking, "I may never....." can cause an overwhelming sadness. Before he "woke up" I dispared over an outfit that he might never see me wear. Now I need to lose the weight required to wear it, so he CAN see me wear it!! (The ball is in MY court now!!!)
The moral to that last paragraph is: make each moment with your loved one count, as we certainly never know when it will be our last....
On a lighter note.... I am becoming a VERY accomplished and efficient pill crusher, tube feeder, and shot giver! Who says you can't teach an "old dog" new tricks!!!!
As Stan would say..."You're getting silly. Go to bed." So good night all...
Love, M
Every night before bed, think of one thing you're grateful for that you've never been grateful for before. GOD HAS A WAY OF TURNING THINGS AROUND FOR YOU.
"If God is for us, who can be against us?"
(Romans 8:31)
Maybe I'll quit counting the days now..... or just do a weekly update.... each day runs into another. (Listen to me, and it's only been one week.) There is always something going on....like today! Three different Home Health gals came. Nurse at 1:30 overlapped with aide at 2:15 who overlapped with speech therapist at 3. It makes for a busy day and a tiring one for Stan, especially.
Sunday I managed to change him a couple of times by myself...sheets and all....while the others were at church. In the afternoon, Brian, Angie, and Isaac stayed with Stan while I did some needed shopping and mailing. Phil and Pete took part in the church progressive dinner event. (Between Church and the dinner, we all worked together to accomplish a commode session. This was no simple task for anyone, least of all Stan.)
re: the mailing....(The valentine cards are sent, but I still have the last of the Christmas cards to mail. They are the ones that need letters inserted for my "old fashioned NON computer" friends. I still have friends who don't know about Stan because I don't have a letter writing program in this computer and don't seem to sit long enough to hand write them.)
One thing that may come out of all this.... Perhaps we can invent some appliances / furniture etc that will make life easier for others. Pete is insisting he will build a bed that makes turning Stan easier on him and on me. This is a major task and has given me a "permanent" backache. And even when it is two or three of us doing it, he cries out in pain. There has to be an easier, less invasive way!!
Did I tell you that the receptionist at Paul's Body Shop GAVE me her portable food processor? It works great. The first thing we pureed was a piece of taco pizza. Today I did some beef stew and it was like magic!! I have been putting his meds in baby food fruit and then in his tube. They seem to mix better into the fruit than into water and it flows through the tube just fine.
There are so many things I still have to learn. Supplies, for instance. I did find some much better pants and liners....bless WalMart!! I am hoping this will give my washing machine a rest.
Today I had to run to Carr's between the therapist leaving and dinnertime. It takes three of the smaller syringes each day for Stan's insulin, and we only initially bought two packs of ten. WalMart Pharmacy is closed on Sunday, so I failed to get any yesterday. Carrs told me that insurance might pay for them if I have a prescription, so I intend to get one. I have the prescriptions for the two kinds of insulin, so you would think that would mean I need syringes?? right!!
When Stan came home, one of his prescriptions was for a stool softener. Well...what was filled was gel caps that do not smash up, and he cannot swallow them...so as I think I already told you, we returned them and Fred's had to order it in liquid. Well... a tiny bottle that was a one day supply cost over ten dollars. I gave him less and made it last two days...but still a major expense. I asked Carrs if there was anything they had that was the same ingredient. Two of the pharmacists tried to find anything ... including calling other stores for information, but it seemed to "no avail." I got my syringes and went shopping for some groceries. Fortunately, I hadn't left the store yet, because I heard a page for the person requesting for Stan Knowlton please return to the pharmacy. They had found a generic bottle that is 473 ml (he takes 30ml per day) and it only costs $4.93!!! They only had one bottle but are ordering more for me. I truly thanked them for their extra effort to help me.
The wind howled for two nights, the snow is now mostly slush and ice. The Carr's parking lot required either a swim suit or hip waders to maneuver. In fact, I changed my first parking place for another because the water was so deep by my car door.
Pete seems to have inherited my penchant for bloody noses, and is having a terrible time getting his under control. He really hasn't been feeling up to par today after a really bad one.
Stan does love company, and for those of you close enough to come visit, please feel welcome to do so. It might be for your "convenience" to call first. We are "always" here (except for that rare case when I will have to take him to see a doctor....a task I dread and haven't figured out the how of, yet.) The inconvenient thing would be if you came during a Home Health visit....they are either checking his vitals, helping bathe him, doing exercises with him that require his input.... so you might want to miss coming while they are here. Otherwise, just come to the front door, and Stan is all set up right there! Like he says, "I'll be right here."
Everyday I find new things that are changed forever in my life. But at least ONE thing is now okay. While Stan was "sleeping" it seemed I discovered dozens of things I needed to ask, that only HE knew the answer to. At least now, he CAN answer them. And he does....his memory is fantastic. Pete needed an eyeglass repair kit today. He asked me where it would be, and since I don't do the repairs, I had no idea...........or rather, my IDEA was for him to ask his dad. He did...and BINGO! Stan knew. Andy said there were NO switch plate covers in the house (when they were getting the turret room ready for Stan.) I insisted there had to be....Stan piped up and told Andy exactly where to look. Someone still needs to write down his fudge recipe and directions. This is the first Christmas without it since he took over the job of making it more than 40 years ago. Little things... like eating a hot dog in Costco by myself instead of with him....and thinking, "I may never....." can cause an overwhelming sadness. Before he "woke up" I dispared over an outfit that he might never see me wear. Now I need to lose the weight required to wear it, so he CAN see me wear it!! (The ball is in MY court now!!!)
The moral to that last paragraph is: make each moment with your loved one count, as we certainly never know when it will be our last....
On a lighter note.... I am becoming a VERY accomplished and efficient pill crusher, tube feeder, and shot giver! Who says you can't teach an "old dog" new tricks!!!!
As Stan would say..."You're getting silly. Go to bed." So good night all...
Love, M
Every night before bed, think of one thing you're grateful for that you've never been grateful for before. GOD HAS A WAY OF TURNING THINGS AROUND FOR YOU.
"If God is for us, who can be against us?"
(Romans 8:31)
Sunday, February 17, 2008
Day 95
Ahhh! There is always something new to be learned!! The day before Stan came home, I went shopping for supplies...and thought I had what I needed. We did bring home several "diapers" from the hospital supplies. (Once things were opened in his room, they were his.) I looked for something similar, and after much searching, finally found a couple of kinds (I thought). Today was "test" day (because I ran out of the "free" ones).....one package is totally inadequate, and the other that says "adjustable underwear" and shows tape tabs............is a pull up with tabs to make them tighter in the waist. After a couple of mishaps, I cut the pull up ones apart from leg to waist right by the tapes. Using those tapes and some clear post office packing tape... we do fine. I have cut the other ones in half and used them as added protection. I can't believe there aren't things on the shelves!! I will check Walmart soon. Just one more glitch in life!
Our blue sky was only here for a few hours on Friday. It snowed all day Saturday. Our day started with Pete having to pull Phil out of the deep snow in our driveway so he could go to the airport to pick up Kacee. (She was on a music tour with one of her classes to Juneau and Sitka.) Brian spent hours snow blowing the driveway, and Pete went to the valley in the afternoon to help Eric. Andy came on his way to work to set up a shelf and hanger for the TV and VCR/DVD so Stan could see it. He has always enjoyed watching Looney Tunes videos with the grandchildren. His mom would read to our kids when they were little....and always end with "That's All Folks!" I bet she said the same thing to him when he was little!!
Isaac was here to help me, and Phil and Kacee came in the evening and made dinner. After church Sunday Isaac plans to go snowboarding! He is like the kid in the Family Circus funnies in today's paper.... standing in a snowstorm, Billy says, "This is the kind of bad weather that I like!"
Pete has promised to be here with Stan after church so I can go to the Chocolate Factory. I really goofed!! With all the preparations for getting Stan home, and then trying to get settled into a workable schedule, meet with all the Home Health people, etc...I didn't get to the store and post office before Valentine's Day. Not only did I NOT get my grandkids V. Cards sent, but I didn't get a couple of little stuffed animals to a little boy for his birthday like I planned. (The C. Factory has a huge supply of them....!! That's why I'm going there! If I buy a truffle or two, don't be surprised!) I'm hoping that even late, he'll feel special. I need to go to Costco while I'm out, too. Isaac really likes grapefruit...and I can get a huge bag of them there. Pete took my Costco card to get some things there, but they wouldn't let him use it. I guess he didn't look like my picture!! (I really really hope I do NOT, either!! It is a thousand times worse than the worst driver's license picture you've ever seen or heard of!!) Hmmm... he DOES look like Stan...why didn't I think to have him take Stan's card!!!!!
I did get excited over some of Stan's "pain" today. He has started complaining about his left thumb hurting. We hope it means the arm/hand is "waking up." It wasn't until late evening that I remembered that for about three or four weeks after his right arm started "working" that he fussed about his right thumb everytime it was touched. We didn't even notice when he quit fussing about that. Do you think this pain means his left hand is beginning to WORK??? In other words.... your prayers are ONCE AGAIN being answered for him!!! Wow!! I MUST remember to notice whenever specific prayers are answered!!! He is such a miracle man!!
So once again...my specific prayer requests for him are:
the use of his left side, that he'll learn to walk again, and that he can get some sleep at night (so that I can, too!)
Thank you so much for your faithfulness!! Please do remember little Darian, too. He started his chemo...and it is rough!! His grandpa said he actually requested some chicken McNuggets...after several days of not being able to keep anything down!! Grandpa Bob was waiting in line for when bfst was over and McNuggets were being cooked!! That brings tears to my eyes!!
Love, M
Our blue sky was only here for a few hours on Friday. It snowed all day Saturday. Our day started with Pete having to pull Phil out of the deep snow in our driveway so he could go to the airport to pick up Kacee. (She was on a music tour with one of her classes to Juneau and Sitka.) Brian spent hours snow blowing the driveway, and Pete went to the valley in the afternoon to help Eric. Andy came on his way to work to set up a shelf and hanger for the TV and VCR/DVD so Stan could see it. He has always enjoyed watching Looney Tunes videos with the grandchildren. His mom would read to our kids when they were little....and always end with "That's All Folks!" I bet she said the same thing to him when he was little!!
Isaac was here to help me, and Phil and Kacee came in the evening and made dinner. After church Sunday Isaac plans to go snowboarding! He is like the kid in the Family Circus funnies in today's paper.... standing in a snowstorm, Billy says, "This is the kind of bad weather that I like!"
Pete has promised to be here with Stan after church so I can go to the Chocolate Factory. I really goofed!! With all the preparations for getting Stan home, and then trying to get settled into a workable schedule, meet with all the Home Health people, etc...I didn't get to the store and post office before Valentine's Day. Not only did I NOT get my grandkids V. Cards sent, but I didn't get a couple of little stuffed animals to a little boy for his birthday like I planned. (The C. Factory has a huge supply of them....!! That's why I'm going there! If I buy a truffle or two, don't be surprised!) I'm hoping that even late, he'll feel special. I need to go to Costco while I'm out, too. Isaac really likes grapefruit...and I can get a huge bag of them there. Pete took my Costco card to get some things there, but they wouldn't let him use it. I guess he didn't look like my picture!! (I really really hope I do NOT, either!! It is a thousand times worse than the worst driver's license picture you've ever seen or heard of!!) Hmmm... he DOES look like Stan...why didn't I think to have him take Stan's card!!!!!
I did get excited over some of Stan's "pain" today. He has started complaining about his left thumb hurting. We hope it means the arm/hand is "waking up." It wasn't until late evening that I remembered that for about three or four weeks after his right arm started "working" that he fussed about his right thumb everytime it was touched. We didn't even notice when he quit fussing about that. Do you think this pain means his left hand is beginning to WORK??? In other words.... your prayers are ONCE AGAIN being answered for him!!! Wow!! I MUST remember to notice whenever specific prayers are answered!!! He is such a miracle man!!
So once again...my specific prayer requests for him are:
the use of his left side, that he'll learn to walk again, and that he can get some sleep at night (so that I can, too!)
Thank you so much for your faithfulness!! Please do remember little Darian, too. He started his chemo...and it is rough!! His grandpa said he actually requested some chicken McNuggets...after several days of not being able to keep anything down!! Grandpa Bob was waiting in line for when bfst was over and McNuggets were being cooked!! That brings tears to my eyes!!
Love, M
Saturday, February 16, 2008
DAY 94
The snow finally stopped and the sky turned a lovely blue, with bright sunlight.... A lovely day! It IS cold, tho. Pete said it is 7 degrees out... a real warm up from the minus numbers we were having during Stan's last two weeks in the hospital. It really warmed up for a couple of days as he came home....unfortunately that brought the snow and difficulty driving. Isaac shoveled the deck that day, so we could get Stan to the door!! Today, I was expecting a Home Health Aide to come help me bathe Stan, and we had over a foot of new snow....so I shoveled the deck to make it possible for her to find the door without wading knee deep. It froze my hands...they hurt pretty bad. I am wondering if I got a light case of frost bite on them sometime in the past....because it doesn't take much to make them hurt these days. Whenever I scrape the car windows, etc. it is my hands that can't handle the cold. The rest of me is plenty warm, so I don't think about gloves until I am hurting....and then I am half done, so why bother. But THEN I have to warm them up carefully.............. Someday I'll remember to put on gloves even though "I'm tough!" My hands don't even touch the snow!! So I don't understand why they get so cold!!
As it turned out, the HHA made it to our road, but it wasn't plowed so she couldn't get here. She called to say she'd reschedule for next week. The bad part is, the phone was in use so I didn't get her call, and spent almost two hours watching for her....making me anxious about vacuuming and "other" things, for fear I wouldn't hear her come or call.
Pete spent a lot of the day downtown.... chiropracter, Stan's meds (the pharmacy originally didn't have enough of one pill and gave Pete the wrong kind of another,so we had to get that fixed), Phil's work and school (they are sharing the truck....Pete had the car last night and it took he and Isaac hours of shoveling snow as they got stuck often coming home....so he didn't want to even consider taking the car today. The truck is four wheel drive.)
We are getting the changing and feeding a little more organized now, but they are still quite a chore to accomplish. Stan is so very patient. It was the same at the hospital....very traumatic for him....lots of turning this way and that, and it hurts his hip and knee to be "rolled" so much. We did give him a good bed bath today, and then Phil, Isaac, Pete, and I hoisted him in the lift over into his recliner (the first time he's sat in it since his birthday, Nov. 13!!) while we changed his sheets etc. We removed the bubble thing that came with his bed that is supposed to help prevent bed sores. It is a rubber mattress liner with a motor that inflates and deflates the baseball sized "bubbles" all over it to keep him from lying on one spot too long. We were told he would still require frequent turnings....
The action caused kind of sharp ridges on the edge of the bubbles that hurt him....so we decided we'd just depend on the frequent turnings...
The hoist is pretty neat, and I am sure he enjoyed a time in his chair. We wrapped him in the soft comforter Cheri made him so that the hoist sling wouldn't cut into him like it did at the hospital when we used it to get him into the shower. It is more than a one man show, tho!!
Deryl and Rick both mentioned the proposed Bible study here at the house with him once a week. I know he will really enjoy that!! Thanks, guys!!
I get my own Bible study from Molly each day, and she always has just the scriptures and dialogue that I need for the day. Sure wish she were here in person!!
All of your "welcome home" emails, prayers, and encouragements are so wonderful. Thank you all!! I am relating them to Stan. We are hoping to get his computer down stairs and some kind of device so that he can use it in bed. There is a lot of "figuring out" stuff yet before we have this down to a workable science.
I've had a couple of "sticker shocks" lately... a bill from the first hospital that doesn't make much sense, and the cost of Stan's meds after medicare and aarp!! Wow~~
Thank you, Jeff, for the clear driveway tonight!! And thanks to Brian for taking care of what Jeff's truck can't get. Our road is also now plowed, so if it doesn't snow again, we are once again able to come and go with ease.
I am off to bed.....Love, M
As it turned out, the HHA made it to our road, but it wasn't plowed so she couldn't get here. She called to say she'd reschedule for next week. The bad part is, the phone was in use so I didn't get her call, and spent almost two hours watching for her....making me anxious about vacuuming and "other" things, for fear I wouldn't hear her come or call.
Pete spent a lot of the day downtown.... chiropracter, Stan's meds (the pharmacy originally didn't have enough of one pill and gave Pete the wrong kind of another,so we had to get that fixed), Phil's work and school (they are sharing the truck....Pete had the car last night and it took he and Isaac hours of shoveling snow as they got stuck often coming home....so he didn't want to even consider taking the car today. The truck is four wheel drive.)
We are getting the changing and feeding a little more organized now, but they are still quite a chore to accomplish. Stan is so very patient. It was the same at the hospital....very traumatic for him....lots of turning this way and that, and it hurts his hip and knee to be "rolled" so much. We did give him a good bed bath today, and then Phil, Isaac, Pete, and I hoisted him in the lift over into his recliner (the first time he's sat in it since his birthday, Nov. 13!!) while we changed his sheets etc. We removed the bubble thing that came with his bed that is supposed to help prevent bed sores. It is a rubber mattress liner with a motor that inflates and deflates the baseball sized "bubbles" all over it to keep him from lying on one spot too long. We were told he would still require frequent turnings....
The action caused kind of sharp ridges on the edge of the bubbles that hurt him....so we decided we'd just depend on the frequent turnings...
The hoist is pretty neat, and I am sure he enjoyed a time in his chair. We wrapped him in the soft comforter Cheri made him so that the hoist sling wouldn't cut into him like it did at the hospital when we used it to get him into the shower. It is more than a one man show, tho!!
Deryl and Rick both mentioned the proposed Bible study here at the house with him once a week. I know he will really enjoy that!! Thanks, guys!!
I get my own Bible study from Molly each day, and she always has just the scriptures and dialogue that I need for the day. Sure wish she were here in person!!
All of your "welcome home" emails, prayers, and encouragements are so wonderful. Thank you all!! I am relating them to Stan. We are hoping to get his computer down stairs and some kind of device so that he can use it in bed. There is a lot of "figuring out" stuff yet before we have this down to a workable science.
I've had a couple of "sticker shocks" lately... a bill from the first hospital that doesn't make much sense, and the cost of Stan's meds after medicare and aarp!! Wow~~
Thank you, Jeff, for the clear driveway tonight!! And thanks to Brian for taking care of what Jeff's truck can't get. Our road is also now plowed, so if it doesn't snow again, we are once again able to come and go with ease.
I am off to bed.....Love, M
Friday, February 15, 2008
day 92 & 93
Wow.... instead of MORE time now that we're home, I seem to have much less time!! I have to get busy early caring for Stan's needs, attempting to at least keep a semblance of order to the house, and then get to my shower and breakfast. Yesterday I had the social worker involved with Home Health Care here for a couple of hours. Today I had the nurse at one and the speech therapist at 3:30. So I had to be done with "everything" by one and then jump right in and fix Stan a lunch and mid day meds and be ready for the next gal. She stayed until after five. I was so tired and so was Stan, so I thought he would nap until dinner....but he just didn't seem able to go to sleep.
The nurse had wanted to come at ten, but was gracious when I told her I had been caring for Stan's needs since just after five, and was just then (about 9:30) finally getting my bfst, and still needed my shower.
Well...I started this last night (Thursday) and managed to be too sleepy...Andy's family were here until about 2 a.m. United is once again flying into Anchorage, so Andy is on a regular evening shift again. Grace and the kids came in to visit and help...and brought home made pizza (which we pureed some taco pizza for Stan's dinner...his favorite!). Andy gets off work about midnight, I think, but when he got here I needed help changing and repositioning Stan, so it was after one for sure, if not two.
Actually, I can hardly remember Wednesday now. With Home Health people coming one and two each day (another is due at noon today) and doing what a host of staff plus me did at the hospital....it is a bit overwhelming right now. I know things will settle down........just don't know WHEN!!
Still it is so wonderful to have him home, and he likes it so much better. He is quite the guy. Somehow he managed to get me a dozen roses for V day AND wrote in the card ....to my wife, Love, Stan....!!! He sent Brian for the flowers, and Brian had him sign the card....he couldn't manage that "usual" signature place, but it is readable and very very special!!!
I am "cheating" a little and putting his pills in applesauce through the tube (they mix in better than in water), and I gave him about 2/3 of his cream of wheat in the tube this morning. He gets so tired eating........and I need him to get the calories.
I changed him by myself this morning (Friday). Pete is at the chiropractor and now having a difficult time getting the truck started. I just roused Isaac to help with Cannon so I could write this.
We had a huge snow storm last night.......so I don't know if the Home Health person will be able to make it to our house. Pete and Isaac had a very hard time getting home last night and even more difficulty getting up our driveway...the wooses! (How DO you spell that funny word??)
We are back to "square one" with the weather..... it is still snowing! I do look forward to "summer." We don't really have spring here, it is more apt to be called "breakup." Meaning..........MESSY!!
My car is beautiful....they did a great job from what I can see. I got a print out about the "care and feeding" of it. heehee
Stan continues to have lots of neck and hip pain, so these would be great to pray about. Thank you so much. And of course, the use of the left side. We aren't completely sure what is going on, but he was moving his left leg several times yesterday. WOW!!!
His hand worries me...it is shrinking or stiffening up...pray that we will all be very diligent in exercising it!!
I do have to get busy....thanks for listening...
Love, M
The nurse had wanted to come at ten, but was gracious when I told her I had been caring for Stan's needs since just after five, and was just then (about 9:30) finally getting my bfst, and still needed my shower.
Well...I started this last night (Thursday) and managed to be too sleepy...Andy's family were here until about 2 a.m. United is once again flying into Anchorage, so Andy is on a regular evening shift again. Grace and the kids came in to visit and help...and brought home made pizza (which we pureed some taco pizza for Stan's dinner...his favorite!). Andy gets off work about midnight, I think, but when he got here I needed help changing and repositioning Stan, so it was after one for sure, if not two.
Actually, I can hardly remember Wednesday now. With Home Health people coming one and two each day (another is due at noon today) and doing what a host of staff plus me did at the hospital....it is a bit overwhelming right now. I know things will settle down........just don't know WHEN!!
Still it is so wonderful to have him home, and he likes it so much better. He is quite the guy. Somehow he managed to get me a dozen roses for V day AND wrote in the card ....to my wife, Love, Stan....!!! He sent Brian for the flowers, and Brian had him sign the card....he couldn't manage that "usual" signature place, but it is readable and very very special!!!
I am "cheating" a little and putting his pills in applesauce through the tube (they mix in better than in water), and I gave him about 2/3 of his cream of wheat in the tube this morning. He gets so tired eating........and I need him to get the calories.
I changed him by myself this morning (Friday). Pete is at the chiropractor and now having a difficult time getting the truck started. I just roused Isaac to help with Cannon so I could write this.
We had a huge snow storm last night.......so I don't know if the Home Health person will be able to make it to our house. Pete and Isaac had a very hard time getting home last night and even more difficulty getting up our driveway...the wooses! (How DO you spell that funny word??)
We are back to "square one" with the weather..... it is still snowing! I do look forward to "summer." We don't really have spring here, it is more apt to be called "breakup." Meaning..........MESSY!!
My car is beautiful....they did a great job from what I can see. I got a print out about the "care and feeding" of it. heehee
Stan continues to have lots of neck and hip pain, so these would be great to pray about. Thank you so much. And of course, the use of the left side. We aren't completely sure what is going on, but he was moving his left leg several times yesterday. WOW!!!
His hand worries me...it is shrinking or stiffening up...pray that we will all be very diligent in exercising it!!
I do have to get busy....thanks for listening...
Love, M
Wednesday, February 13, 2008
Days 90 & 91
Oh dear!! I did want to let you all know IMMEDIATELY when Stan got home but haven't had a second to write. (I even started that first sentence hours ago.) But anyway!!! NOW we can all celebrate!!!
He had lots of phone calls today... I am sorry for those I had to cut short. Many of the calls were during the nurse's visit, and I just couldn't stand and hold the phone to Stan's ear and be attentive to her. Hopefully, there won't ALWAYS be a meeting going on. (It does begin to sound like it, tho. There will be a Social worker, nurse, PT, OT, and speech therapist on a regular basis, and some one to come help bathe him. At first I declined that help, but decided it would cut some of my time down....so reversed the decision.)
Pete went to the hospital after taking Phil to work yesterday and was there to feed Stan bfst. He told him we were doing things to get him ready to go home and would be back as soon as possible. I still had to deliver the car for its "beauty makeover" and then get to the hospital. Pete spent the day running errands, and then met me at the body shop and took me to St. Elias. It was almost one when I got there. Stan's lunch was waiting for me!! While I fed him, I sent Pete flying home to get him clothes to wear....I had totally forgot any. The transportation was supposed to arrive at 3 and it was close to two when I sent Pete home. He had to fetch Isaac from Jake's house on the way, and have Isaac shovel off the front deck so we could get Stan into the house. If you remember, I did mention the new snow....it wasn't just on the car and the road. The deck was inundated, too!!
I took care of all the paper work, finished packing up our stuff (the staff had three boxes about 12" by 18" by 10 " already full of stuff we were able to take home.....
When I finished with all that, I still had plenty of time to worry about Pete getting back in time to NOT hold up the transportation company. I think I actually started pacing the floor....but in he walked at about 3:02! At 3:30 (with an ever increasingly anxious Stan) we got the message that the transcare people were running 45 minutes late. I figured that meant they would be there in about 15 minutes. WRONG!! They arrived 45 minutes later at 4:30. Andy had called and said he was on his way....I told him it was snowing hard, the van was late, and that he just might beat us home. Pete had to pick Phil up from work and deliver him to class at four, so I was sure hoping I could ride in the van. It is much too far, and it was much too blizzardly to walk home....especially since I did not wear a coat!
The van finally arrived, we dressed Stan and wrapped him in the lovely quilt Cheri made him a year ago for Christmas. (BTW HE even "ordered" what he wanted to wear!! It had been 90 days since he'd even seen any of his clothes!)
We did forget a hat, and he mentioned to someone later that he got snowed on! It was his first ride in his new wheelchair with a nice high back. Sadly, he didn't give the back much of a work out....his head kind of fell forward most of the way. I was seatbelted in, and couldn't reach his head. I was able to stick a bag of diapers under his bad foot when it slipped off the foot rest. I don't think he could see much of the scenery on the way because of his position and because there are no windows back where he was locked into. None of us could see much of the "scenery" anyway....it was snowing hard.
We did beat Andy, and Isaac did have the deck all shoveled and sanded. It took both the transcare guys and Isaac to get the wheel chair up the 3 steps to the landing, and then up the next 3 steps to the deck....but they made it!! From there it was easy....he was rolled to the front door, and his room is right off the entry. We left him in the wheelchair until Andy arrived....maybe ten minutes/maybe less....after the transcare guys left. Again it took Andy, Isaac, and me to hoist him into bed. We MADE IT!! Pete was picking up Phil, taking him to his next class and then headed to Fred Meyer's to get Stan's myriad of meds.
Everything got off to a late start....Fred's didn't "deliver the goods" until after 8 p.m. I couldn't feed Stan until I had the meds. So his dinner and then his bedtime were both pushed back to "late." But...we succeeded, and he slept until about 3 (or was quiet). He woke me with a "help me, help me" for a drink of water. I heard him again about five, but Isaac was taking care of him. I got up and going about 7....and got a call from the Home Health nurse asking if she could come early. I was still trying to figure out a schedule, get Stan changed and fed, etc...and I stalled her until one....then I got myself in gear and thought maybe I could be ready by 11, and would rather not put off the unknown...so I called and rescheduled. Turned out that in all my "figuring" I forgot about me eating!! However, she was late (like almost an hour) so I ate standing by the window watching for her. Her meeting took almost 3 hours....so now Stan's lunch was really late again. It wasn't a bad visit though.... We did a lot of paperwork first, and then she examined Stan from "head to toe." He is rattley when he coughs (which is often) so I was glad when she said his lungs were clear. I think the yuk is all drainage from his sinusitis.
He ate all his lunch. I let him have a small glass of Coke for his beverage, since he drank the apple/pomegranite juice mixture I concocted for his bfst.
His stomach tube got all stained dark before leaving St. Elias. I was told to clean it with Coke, so I tried. It didn't come very clean, and I don't think there is any way to change it. It seemed to be leaking a little around the site tonight. I don't understand that. I don't want ANY problems developing at home!!
A couple of more "setbacks"... the stool softener the pharmacy gave Pete said "capsules" but they were gel caps and could not be crushed...and certainly couldn't be swallowed. Pete returned them...open...18.99!!!... and said we wanted our money back and needed the liquid form or something crushable. They weren't going to take them back because they were opened. Pete convinced them it was their error, and they would, too, take them back. Then tonight he said he had a headache, and I decided to give him Tylenol. We didn't buy any new, as we had a big bottle already. Welllllll...they are gel caps....I did manage to crush them, but had to pick out all the gel covering before I could get them into his feeding tube. Oh, yes. I thought to try his pills in applesauce at dinner time. ONE bite and he almost vomited!! I couldn't separate them from the applesauce (they were all crushed up and a PART of the food now) so I added water and fed the whole thing through the tube. I don't see how anyone ....even those who can swallow.... could get this many pills down by mouth!!
My hands, especially around the nails, are getting so sore from all the washing!! Poor me!! But they do hurt... I didn't realize how much I use my thumbs to type...and it is the sides....so it hurts!! Hits on that edge where the "hangnails" have formed. (I understand that "this too will pass." )
The boys are getting involved and doing a great job. Pete and Isaac have helped ME change Stan before, but tonight while I fixed his dinner and pills, Brian, Pete. and Isaac did the job together without me there....and did a great job.
I have the baby monitor that I used with mom by my bed, and my "sewing room" one by Pete's bed. They are wonderful aides.
I need to go check on him..... I hate the way he coughs....but he always did have a loud harsh cough, even before the stroke, so I know it sounds worse than it probably is.
Then I'll try to get some ZZZZZZZZ's!
We didn't get the additional 12 inches of snow last night and today.... I am sooo glad!!
Love, M
He had lots of phone calls today... I am sorry for those I had to cut short. Many of the calls were during the nurse's visit, and I just couldn't stand and hold the phone to Stan's ear and be attentive to her. Hopefully, there won't ALWAYS be a meeting going on. (It does begin to sound like it, tho. There will be a Social worker, nurse, PT, OT, and speech therapist on a regular basis, and some one to come help bathe him. At first I declined that help, but decided it would cut some of my time down....so reversed the decision.)
Pete went to the hospital after taking Phil to work yesterday and was there to feed Stan bfst. He told him we were doing things to get him ready to go home and would be back as soon as possible. I still had to deliver the car for its "beauty makeover" and then get to the hospital. Pete spent the day running errands, and then met me at the body shop and took me to St. Elias. It was almost one when I got there. Stan's lunch was waiting for me!! While I fed him, I sent Pete flying home to get him clothes to wear....I had totally forgot any. The transportation was supposed to arrive at 3 and it was close to two when I sent Pete home. He had to fetch Isaac from Jake's house on the way, and have Isaac shovel off the front deck so we could get Stan into the house. If you remember, I did mention the new snow....it wasn't just on the car and the road. The deck was inundated, too!!
I took care of all the paper work, finished packing up our stuff (the staff had three boxes about 12" by 18" by 10 " already full of stuff we were able to take home.....
When I finished with all that, I still had plenty of time to worry about Pete getting back in time to NOT hold up the transportation company. I think I actually started pacing the floor....but in he walked at about 3:02! At 3:30 (with an ever increasingly anxious Stan) we got the message that the transcare people were running 45 minutes late. I figured that meant they would be there in about 15 minutes. WRONG!! They arrived 45 minutes later at 4:30. Andy had called and said he was on his way....I told him it was snowing hard, the van was late, and that he just might beat us home. Pete had to pick Phil up from work and deliver him to class at four, so I was sure hoping I could ride in the van. It is much too far, and it was much too blizzardly to walk home....especially since I did not wear a coat!
The van finally arrived, we dressed Stan and wrapped him in the lovely quilt Cheri made him a year ago for Christmas. (BTW HE even "ordered" what he wanted to wear!! It had been 90 days since he'd even seen any of his clothes!)
We did forget a hat, and he mentioned to someone later that he got snowed on! It was his first ride in his new wheelchair with a nice high back. Sadly, he didn't give the back much of a work out....his head kind of fell forward most of the way. I was seatbelted in, and couldn't reach his head. I was able to stick a bag of diapers under his bad foot when it slipped off the foot rest. I don't think he could see much of the scenery on the way because of his position and because there are no windows back where he was locked into. None of us could see much of the "scenery" anyway....it was snowing hard.
We did beat Andy, and Isaac did have the deck all shoveled and sanded. It took both the transcare guys and Isaac to get the wheel chair up the 3 steps to the landing, and then up the next 3 steps to the deck....but they made it!! From there it was easy....he was rolled to the front door, and his room is right off the entry. We left him in the wheelchair until Andy arrived....maybe ten minutes/maybe less....after the transcare guys left. Again it took Andy, Isaac, and me to hoist him into bed. We MADE IT!! Pete was picking up Phil, taking him to his next class and then headed to Fred Meyer's to get Stan's myriad of meds.
Everything got off to a late start....Fred's didn't "deliver the goods" until after 8 p.m. I couldn't feed Stan until I had the meds. So his dinner and then his bedtime were both pushed back to "late." But...we succeeded, and he slept until about 3 (or was quiet). He woke me with a "help me, help me" for a drink of water. I heard him again about five, but Isaac was taking care of him. I got up and going about 7....and got a call from the Home Health nurse asking if she could come early. I was still trying to figure out a schedule, get Stan changed and fed, etc...and I stalled her until one....then I got myself in gear and thought maybe I could be ready by 11, and would rather not put off the unknown...so I called and rescheduled. Turned out that in all my "figuring" I forgot about me eating!! However, she was late (like almost an hour) so I ate standing by the window watching for her. Her meeting took almost 3 hours....so now Stan's lunch was really late again. It wasn't a bad visit though.... We did a lot of paperwork first, and then she examined Stan from "head to toe." He is rattley when he coughs (which is often) so I was glad when she said his lungs were clear. I think the yuk is all drainage from his sinusitis.
He ate all his lunch. I let him have a small glass of Coke for his beverage, since he drank the apple/pomegranite juice mixture I concocted for his bfst.
His stomach tube got all stained dark before leaving St. Elias. I was told to clean it with Coke, so I tried. It didn't come very clean, and I don't think there is any way to change it. It seemed to be leaking a little around the site tonight. I don't understand that. I don't want ANY problems developing at home!!
A couple of more "setbacks"... the stool softener the pharmacy gave Pete said "capsules" but they were gel caps and could not be crushed...and certainly couldn't be swallowed. Pete returned them...open...18.99!!!... and said we wanted our money back and needed the liquid form or something crushable. They weren't going to take them back because they were opened. Pete convinced them it was their error, and they would, too, take them back. Then tonight he said he had a headache, and I decided to give him Tylenol. We didn't buy any new, as we had a big bottle already. Welllllll...they are gel caps....I did manage to crush them, but had to pick out all the gel covering before I could get them into his feeding tube. Oh, yes. I thought to try his pills in applesauce at dinner time. ONE bite and he almost vomited!! I couldn't separate them from the applesauce (they were all crushed up and a PART of the food now) so I added water and fed the whole thing through the tube. I don't see how anyone ....even those who can swallow.... could get this many pills down by mouth!!
My hands, especially around the nails, are getting so sore from all the washing!! Poor me!! But they do hurt... I didn't realize how much I use my thumbs to type...and it is the sides....so it hurts!! Hits on that edge where the "hangnails" have formed. (I understand that "this too will pass." )
The boys are getting involved and doing a great job. Pete and Isaac have helped ME change Stan before, but tonight while I fixed his dinner and pills, Brian, Pete. and Isaac did the job together without me there....and did a great job.
I have the baby monitor that I used with mom by my bed, and my "sewing room" one by Pete's bed. They are wonderful aides.
I need to go check on him..... I hate the way he coughs....but he always did have a loud harsh cough, even before the stroke, so I know it sounds worse than it probably is.
Then I'll try to get some ZZZZZZZZ's!
We didn't get the additional 12 inches of snow last night and today.... I am sooo glad!!
Love, M
Monday, February 11, 2008
Day 89
As I prepared myself to write an update for Sunday, I read my morning emails. This is the first paragraph from Molly's email today:
Hi Madeline. Maybe this will be the day. This is the day the Lord has made, and maybe it’s the day Stan will come home. God’s timing is perfect, so we’ll trust Him to choose the day. I’m praying for a peaceful transition from hospital to home – peaceful, meaning no medical emergencies, and peaceful, knowing that God will take care of every situation and lead you in the path He wants you to take. He’ll guide you with His eye upon you, in the way that Stan will benefit from. For you know the plans the Lord has for you, plans for good and not for evil, to give you a future and a hope.
It seemed a great way to start this email!!!
"Today IS the day the Lord has made! WE (The Knowltons) will rejoice and be glad in it." Ps. 118
I talked to the doctor yesterday (Sunday) and he said he sees no reason for Stan to NOT come home today.
Sunday: I left home in time to see Stan before going to church. I'm so glad I did. His breakfast was sitting on the tray....waiting for family. I fed him and checked with his nurse about meds. His headache was bad again, and not just when he coughed. It turned out that he was pretty stopped up .... I think the effort made his head feel like it would burst, so he would stop trying.
After church (actually I left during the last song) I hurried back to the hospital to feed him his lunch. Stan's head was still aching and nothing had "helped" yet with his other problem. Andy and his girls came in close to 3:30. He was on his way to the house to finish insulating around the turret room windows to make that room warmer for Stan. (He did a great job!!) Kathy came after church and just when Andy arrived she had mentioned that she was going to the university to listen to Phil's girl friend's clarinet recital. I had wanted to go, too, since I hadn't heard Kacee play yet. (Louise, did Danny play the alto or the bass clarinet??)
So, with Andy and family there with Stan, Kathy and I went to the recital. The six students participating are all majoring in music education. A group of their "practice teaching" 6th grade students came and performed a couple of pieces, too. The ensemble finished with a piece by Mozart, using two clarinets, a soprano, alto, bass, and contra alto clarinet. It was beautiful.
It also lasted a lot longer than we expected. It was after six when I got back to the hospital, and there was Stan's dinner...waiting for me to feed him. He wasn't feeling much like eating....still....but I encouraged him with the info that if he didn't eat, he might be put back on the IV type food into his tube...and have to stay another day. He ate! But oh the misery he was in!! (He finally managed to "get the job done" about midnight! So coming home should still be a "GO.") I hope that also helped the headache.
Brian arrived after work and was greeted by Kathy with an, "Hello, Stranger!" He responded with, "Hello, Stranger than me!" I had never heard that comment before....Kathy, either. She was "impressed." heehee
Deryl and Kelly came and brought communion. That was a treat that we all shared in with Stan. Deryl shared the same thought that Rick E. had brought that morning....based on the 23rd Psalm.
I packed up a lot of "stuff" to take home.....in prep for today!! There will still be a load! And I have been taking things or sending things home for several days!! We did "live" there for six weeks.....! Boy, do things accumulate!
I have to remember his teeth and razor today. We got him a nice electric razor not long after he arrived at St. Elias. They were shaving him with the cheapest little Bic you've ever seen....and they SCRAPE your face to pieces.
For the record.....many of his nurses and aides were / are very loving and most tried to take good care of him. There was a lot of miscommunication that caused that care to be downgraded at times.... So I didn't mean for my other emails to paint a totally bad picture. There were way too many serious issues to not have real concerns ....even for his safety, which I hope they will address for future patients' care. I think the four "biggies" were his cathetar being ripped out of him (fortunately, it BROKE instead), his PICC line malfunctioning and causing a huge bleed, his head getting bonked, and his BP being taken on the forbidden arm. Each one of those had the potential to be very painful and / or fatal!
He is anxious to come home. And we are anxious for him to be home.
I keep thinking I should give you weather reports....and failed to do so. The past week or so has been very cold again, with absolutely gorgeous blue skies and views of the snow covered mountains to the north and west of us!! (The ones that are snow covered year round, and an artist's dream "when they show.") I tend to get used to the lovely, but cold, days, and easy driving. So today, I get to adjust my thinking to driving in fresh snow! We got about four or five new inches over night. I didn't even know to expect it, so what a surprise. (How weird can I get....to be "surprised" by new snow in February in Alaska????)
I have to get going.....deliver my car to Paul's Body Shop for a new back bumper and front windshield..... Then get a ride to the hospital and maybe come in the TransCare vehicle with Stan!
I'll let you know how the day goes.......
Love, M
Hi Madeline. Maybe this will be the day. This is the day the Lord has made, and maybe it’s the day Stan will come home. God’s timing is perfect, so we’ll trust Him to choose the day. I’m praying for a peaceful transition from hospital to home – peaceful, meaning no medical emergencies, and peaceful, knowing that God will take care of every situation and lead you in the path He wants you to take. He’ll guide you with His eye upon you, in the way that Stan will benefit from. For you know the plans the Lord has for you, plans for good and not for evil, to give you a future and a hope.
It seemed a great way to start this email!!!
"Today IS the day the Lord has made! WE (The Knowltons) will rejoice and be glad in it." Ps. 118
I talked to the doctor yesterday (Sunday) and he said he sees no reason for Stan to NOT come home today.
Sunday: I left home in time to see Stan before going to church. I'm so glad I did. His breakfast was sitting on the tray....waiting for family. I fed him and checked with his nurse about meds. His headache was bad again, and not just when he coughed. It turned out that he was pretty stopped up .... I think the effort made his head feel like it would burst, so he would stop trying.
After church (actually I left during the last song) I hurried back to the hospital to feed him his lunch. Stan's head was still aching and nothing had "helped" yet with his other problem. Andy and his girls came in close to 3:30. He was on his way to the house to finish insulating around the turret room windows to make that room warmer for Stan. (He did a great job!!) Kathy came after church and just when Andy arrived she had mentioned that she was going to the university to listen to Phil's girl friend's clarinet recital. I had wanted to go, too, since I hadn't heard Kacee play yet. (Louise, did Danny play the alto or the bass clarinet??)
So, with Andy and family there with Stan, Kathy and I went to the recital. The six students participating are all majoring in music education. A group of their "practice teaching" 6th grade students came and performed a couple of pieces, too. The ensemble finished with a piece by Mozart, using two clarinets, a soprano, alto, bass, and contra alto clarinet. It was beautiful.
It also lasted a lot longer than we expected. It was after six when I got back to the hospital, and there was Stan's dinner...waiting for me to feed him. He wasn't feeling much like eating....still....but I encouraged him with the info that if he didn't eat, he might be put back on the IV type food into his tube...and have to stay another day. He ate! But oh the misery he was in!! (He finally managed to "get the job done" about midnight! So coming home should still be a "GO.") I hope that also helped the headache.
Brian arrived after work and was greeted by Kathy with an, "Hello, Stranger!" He responded with, "Hello, Stranger than me!" I had never heard that comment before....Kathy, either. She was "impressed." heehee
Deryl and Kelly came and brought communion. That was a treat that we all shared in with Stan. Deryl shared the same thought that Rick E. had brought that morning....based on the 23rd Psalm.
I packed up a lot of "stuff" to take home.....in prep for today!! There will still be a load! And I have been taking things or sending things home for several days!! We did "live" there for six weeks.....! Boy, do things accumulate!
I have to remember his teeth and razor today. We got him a nice electric razor not long after he arrived at St. Elias. They were shaving him with the cheapest little Bic you've ever seen....and they SCRAPE your face to pieces.
For the record.....many of his nurses and aides were / are very loving and most tried to take good care of him. There was a lot of miscommunication that caused that care to be downgraded at times.... So I didn't mean for my other emails to paint a totally bad picture. There were way too many serious issues to not have real concerns ....even for his safety, which I hope they will address for future patients' care. I think the four "biggies" were his cathetar being ripped out of him (fortunately, it BROKE instead), his PICC line malfunctioning and causing a huge bleed, his head getting bonked, and his BP being taken on the forbidden arm. Each one of those had the potential to be very painful and / or fatal!
He is anxious to come home. And we are anxious for him to be home.
I keep thinking I should give you weather reports....and failed to do so. The past week or so has been very cold again, with absolutely gorgeous blue skies and views of the snow covered mountains to the north and west of us!! (The ones that are snow covered year round, and an artist's dream "when they show.") I tend to get used to the lovely, but cold, days, and easy driving. So today, I get to adjust my thinking to driving in fresh snow! We got about four or five new inches over night. I didn't even know to expect it, so what a surprise. (How weird can I get....to be "surprised" by new snow in February in Alaska????)
I have to get going.....deliver my car to Paul's Body Shop for a new back bumper and front windshield..... Then get a ride to the hospital and maybe come in the TransCare vehicle with Stan!
I'll let you know how the day goes.......
Love, M
Sunday, February 10, 2008
Day 88
This was supposed to be "the final day" in the hospital...but as you know, he is still there.
I talked to the doctor and listened to his "report" regarding the CT scan. (He ordered a CTA scan....I am not sure how that differs from a CAT scan??) He did say that Stan has mastoiditis and that it usually requires at least six weeks of meds and if it doesn't clear up, it means a "simple" procedure of sticking a needle in his head to drain the area. Am I supposed to transport him back to the hospital for a scan in six weeks??? And is this MY fault, since he will be coming home in this condition. I don't even know what doctor will be in charge of him once he is home. Or how to determine if he is over the illness.
On the bright side, Stan is feeling better. He is on some antibiotic that I have never heard of before. I'll try to get the spelling copied down today (Sunday).
It was a quiet day. I had to leave mid afternoon to go to Costco. While I was gone, I missed Kathy....for the second time in two days!! It is early enough now that I should go feed Stan bfst and then go to church. He would like that. He expected Pete for bfst yesterday since Pete had been there all week....after taking Phil to work, he'd stop and feed Stan. But Phil doesn't work on Saturday, so they didn't get up as early.
Monday will be busy. The car is supposed to go to its "hospital" to get fixed and Stan is to come home, and I am supposed to have a meeting with some Home Health people.
I have received lots of supporting and encouraging emails from many of you, and I just want to tell you I would like to answer individually, but just can't do it right now. Just know that ALL your prayers and cares are appreciated.
Please remember that I had to leave off caring for a very ill sister (Jeanne or Abbie) who still needs our prayers. And also little Darian. I will let you know his update when I have one. Thank you all more than words can express.
Molly sent me the following scripture yesterday:
2nd Corinthians, chapter 1:
3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 Who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. 5 For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort, too. 6 If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. 7 Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.
8 For we do not want you to be ignorant, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. 9 Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God Who raises the dead. 10 He delivered us from such a deadly peril, and He will deliver us. On Him we have set our hope that He will deliver us again. 11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.
Thank you, again!
Love, M
I talked to the doctor and listened to his "report" regarding the CT scan. (He ordered a CTA scan....I am not sure how that differs from a CAT scan??) He did say that Stan has mastoiditis and that it usually requires at least six weeks of meds and if it doesn't clear up, it means a "simple" procedure of sticking a needle in his head to drain the area. Am I supposed to transport him back to the hospital for a scan in six weeks??? And is this MY fault, since he will be coming home in this condition. I don't even know what doctor will be in charge of him once he is home. Or how to determine if he is over the illness.
On the bright side, Stan is feeling better. He is on some antibiotic that I have never heard of before. I'll try to get the spelling copied down today (Sunday).
It was a quiet day. I had to leave mid afternoon to go to Costco. While I was gone, I missed Kathy....for the second time in two days!! It is early enough now that I should go feed Stan bfst and then go to church. He would like that. He expected Pete for bfst yesterday since Pete had been there all week....after taking Phil to work, he'd stop and feed Stan. But Phil doesn't work on Saturday, so they didn't get up as early.
Monday will be busy. The car is supposed to go to its "hospital" to get fixed and Stan is to come home, and I am supposed to have a meeting with some Home Health people.
I have received lots of supporting and encouraging emails from many of you, and I just want to tell you I would like to answer individually, but just can't do it right now. Just know that ALL your prayers and cares are appreciated.
Please remember that I had to leave off caring for a very ill sister (Jeanne or Abbie) who still needs our prayers. And also little Darian. I will let you know his update when I have one. Thank you all more than words can express.
Molly sent me the following scripture yesterday:
2nd Corinthians, chapter 1:
3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 Who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. 5 For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort, too. 6 If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. 7 Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.
8 For we do not want you to be ignorant, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. 9 Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God Who raises the dead. 10 He delivered us from such a deadly peril, and He will deliver us. On Him we have set our hope that He will deliver us again. 11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.
Thank you, again!
Love, M
Saturday, February 9, 2008
Day 87
"The best plans of mice and men oft......" We are told Stan can't come home until Monday because they need to monitor how the new meds affect his coumaden.
I went on the web.....I know, here I go micromanaging.... and read a bit about mastoiditis. Most of the info said antibiotics are usually given by IV and it takes weeks of monitoring before you are okay. Another site mentioned hospitalization was usually required.... so JUST WHAT is the real reason Stan is being kept until Monday?? If I sound skeptical, it is because his doctor (the in house doctor at St. Elias.... they have five that rotate in and out every 2 weeks or so...this is the doctor who was his first contact at St. E, and is now back in the saddle.) based his assumption that Stan's headaches were "normal" and nothing to be concerned about on his asking Stan ONE time if he had a headache, and was told "no." I was told by a nurse that Stan's severe headaches starting on Tuesday were well documented. To me, "well documented" would mean that not only were they mentioned, but that they occurred when he coughed.
Stan was left to suffer for three days and two nights before any treatment or even stronger pain meds were administered....based on the doctor's assumption!
When I heard the term Mastoiditis I was alarmed because when Andy was 14 months old and I called my mother to ask her if she thought he had the mumps based on the swelling behind his ears in his neck area....she became very concerned that he might have mastoiditis....and she considered it very serious. Turned out, he had mono!! But I still remember Mom's reaction... According to the internet, it "used" to be very serious and often fatal before antibiotics. Well, guess what??? Antibiotics aren't going to do any good if they're kept on shelf!! Stan wasn't "diagnosed" and given them for three days!
I have only heard from the case manager. It was later in the day when she called back about the bed etc delivery, that she told me Stan would have to stay until Monday because he has sinusitis and mastoiditis. Earlier she had just told me about the sinusitis.
I didn't get to the hospital yesterday until evening because I had to stay home to receive the bed, lift, etc....and sign for them. They didn't come until about 4:40, had to be put together, and I had to be "trained" in their use. They are a medicare rental use...and very awesome. The bed has the split rails, and it has a mattress lining that is made up of a multitude of round air pockets that are controlled by a motor. The pockets alternate in hardness and softness to help keep him from getting bed sores. We have been very blessed in that department so far! Six weeks in each hospital...and NO sores!
The lift is manual...so will be much "harder" than the one at the hospital to lift and move him, but also has more flexibility. It's "legs" are two "tines" that can be adjusted wider apart to fit around a chair, for example, so that you can get closer. The one at the hospital was a curved bar, so that when you bumped into the chair, you could go no further. I think it will work great for me to concoct an apparatus that will allow me to roll him from side to side for clean up etc by myself!! I have been trying to dream up a motor or something that would allow this...I now have the "method" so I just have to design something to put under/around him for the turning.
The nurse and aide last night who were on the night before tried to "play down" the bleed. But I did find that after Pete left, the doctor was called and came in.....we're talking middle of the night. Doesn't that sound like a little abnormal to you?? I really am getting scared to leave him. First the head being banged on the end of the bed, not being reported, when we did ask about it we were misunderstood, as in "his head hit the trapeze bar above him" ... NO WAY... his head hit the bar at the head of the bed while he was being pulled up in the bed. He tends to slide down and his feet get all pushed up at the foot. If he had been sitting up and bumped his head on the bar above...NO, he wouldn't have had a very hard hit. He says it felt like he was hit with a baseball bat.
Next....the signs being ignored and his BP being taken in the clotted arm. Even if it didn't hurt, it scared him so much that he became extremely agitated! And now the picc line leaking .... enough in one hour to soak a pillow case and leave a huge congealed area of blood.
What is very upsetting, too, is the "accusation" toward me on Thursday by the doctor saying "Stan would be back in a hospital in the future" inferring or stating (can't remember which...I was a bit in shock) that it was because I was taking him home instead of putting him in a nursing home type unit.
Okay...sorry...too much frustration here!! I need to get going to see how he is this morning. Brian and Angie came later last night and massaged his neck and feet. (and my neck, too!) Katie filled in for me at noon and fed him, which I was so glad to learn, and Sondra and Christi ministered to him in the afternoon. Pete was there in the morning to feed him bfst and Andy stopped by before coming to the house to help me continue to get ready.
The kids were awesome. I did an about face on where I wanted to put Stan's bed and so that meant getting an entirely different area ready. The downstairs turret room is where Stan spent most of his last two or three years when he was relaxing at home, so I know it will be comforting to him. He is looking forward to sitting in his large recliner! Also, it has a large doorway opening for easy deliverance of the equipment...and...it is just steps away from the front door. When summer comes, I can wheel him out on the deck either in the wheel chair or the bed.... It can be curtained off if necessary, or left open to the entry so Stan can see everyone who enters. My original plan was to have him upstairs so that I could be busy about cooking, computer, etc and still be close to him. I'll just have to adjust my activities....but I began to realize that mostly...there was no way I was going to get him up and down the stairs for doctor appts. etc.
An hour ... or even half hour... before the bed arrived, I was ready to panic...but it all came together and I am very pleased with the result!!
I need to go.... so will let you all know about today's events as they happen!!!
Love, M
I went on the web.....I know, here I go micromanaging.... and read a bit about mastoiditis. Most of the info said antibiotics are usually given by IV and it takes weeks of monitoring before you are okay. Another site mentioned hospitalization was usually required.... so JUST WHAT is the real reason Stan is being kept until Monday?? If I sound skeptical, it is because his doctor (the in house doctor at St. Elias.... they have five that rotate in and out every 2 weeks or so...this is the doctor who was his first contact at St. E, and is now back in the saddle.) based his assumption that Stan's headaches were "normal" and nothing to be concerned about on his asking Stan ONE time if he had a headache, and was told "no." I was told by a nurse that Stan's severe headaches starting on Tuesday were well documented. To me, "well documented" would mean that not only were they mentioned, but that they occurred when he coughed.
Stan was left to suffer for three days and two nights before any treatment or even stronger pain meds were administered....based on the doctor's assumption!
When I heard the term Mastoiditis I was alarmed because when Andy was 14 months old and I called my mother to ask her if she thought he had the mumps based on the swelling behind his ears in his neck area....she became very concerned that he might have mastoiditis....and she considered it very serious. Turned out, he had mono!! But I still remember Mom's reaction... According to the internet, it "used" to be very serious and often fatal before antibiotics. Well, guess what??? Antibiotics aren't going to do any good if they're kept on shelf!! Stan wasn't "diagnosed" and given them for three days!
I have only heard from the case manager. It was later in the day when she called back about the bed etc delivery, that she told me Stan would have to stay until Monday because he has sinusitis and mastoiditis. Earlier she had just told me about the sinusitis.
I didn't get to the hospital yesterday until evening because I had to stay home to receive the bed, lift, etc....and sign for them. They didn't come until about 4:40, had to be put together, and I had to be "trained" in their use. They are a medicare rental use...and very awesome. The bed has the split rails, and it has a mattress lining that is made up of a multitude of round air pockets that are controlled by a motor. The pockets alternate in hardness and softness to help keep him from getting bed sores. We have been very blessed in that department so far! Six weeks in each hospital...and NO sores!
The lift is manual...so will be much "harder" than the one at the hospital to lift and move him, but also has more flexibility. It's "legs" are two "tines" that can be adjusted wider apart to fit around a chair, for example, so that you can get closer. The one at the hospital was a curved bar, so that when you bumped into the chair, you could go no further. I think it will work great for me to concoct an apparatus that will allow me to roll him from side to side for clean up etc by myself!! I have been trying to dream up a motor or something that would allow this...I now have the "method" so I just have to design something to put under/around him for the turning.
The nurse and aide last night who were on the night before tried to "play down" the bleed. But I did find that after Pete left, the doctor was called and came in.....we're talking middle of the night. Doesn't that sound like a little abnormal to you?? I really am getting scared to leave him. First the head being banged on the end of the bed, not being reported, when we did ask about it we were misunderstood, as in "his head hit the trapeze bar above him" ... NO WAY... his head hit the bar at the head of the bed while he was being pulled up in the bed. He tends to slide down and his feet get all pushed up at the foot. If he had been sitting up and bumped his head on the bar above...NO, he wouldn't have had a very hard hit. He says it felt like he was hit with a baseball bat.
Next....the signs being ignored and his BP being taken in the clotted arm. Even if it didn't hurt, it scared him so much that he became extremely agitated! And now the picc line leaking .... enough in one hour to soak a pillow case and leave a huge congealed area of blood.
What is very upsetting, too, is the "accusation" toward me on Thursday by the doctor saying "Stan would be back in a hospital in the future" inferring or stating (can't remember which...I was a bit in shock) that it was because I was taking him home instead of putting him in a nursing home type unit.
Okay...sorry...too much frustration here!! I need to get going to see how he is this morning. Brian and Angie came later last night and massaged his neck and feet. (and my neck, too!) Katie filled in for me at noon and fed him, which I was so glad to learn, and Sondra and Christi ministered to him in the afternoon. Pete was there in the morning to feed him bfst and Andy stopped by before coming to the house to help me continue to get ready.
The kids were awesome. I did an about face on where I wanted to put Stan's bed and so that meant getting an entirely different area ready. The downstairs turret room is where Stan spent most of his last two or three years when he was relaxing at home, so I know it will be comforting to him. He is looking forward to sitting in his large recliner! Also, it has a large doorway opening for easy deliverance of the equipment...and...it is just steps away from the front door. When summer comes, I can wheel him out on the deck either in the wheel chair or the bed.... It can be curtained off if necessary, or left open to the entry so Stan can see everyone who enters. My original plan was to have him upstairs so that I could be busy about cooking, computer, etc and still be close to him. I'll just have to adjust my activities....but I began to realize that mostly...there was no way I was going to get him up and down the stairs for doctor appts. etc.
An hour ... or even half hour... before the bed arrived, I was ready to panic...but it all came together and I am very pleased with the result!!
I need to go.... so will let you all know about today's events as they happen!!!
Love, M
Friday, February 8, 2008
Day 86
Without your prayers, I know I would really be a basket case!!! I don't even want to write an update...it is much too depressing!
I wrote a long email of my concerns, but decided to just send it to myself and not burden you all with it. If anyone really wants to read it, let me know.
I will instead give you a short version of yesterday....
1. I had my appt with the doctor and the case manager. The gist of it was A. Stan cannot go back on pills for his diabetes, but must remain on insulin. B. My concerns about all the meds and the data that says this shouldn't be mixed with that, etc.... was lawyer talk to keep the drug companies from being sued. C. I need to trust the doctor to decide which meds can be combined. D. I need to quit "micromanaging" Stan's care.
E. The doctor thought Stan's head aches were "normal" and did not realize they were just excruiating when he coughed (this was documented by many persons, and many times!)
2. I noticed that his pic line had a little dried blood at the site, but "stopped" micromanaging as per instructions.
3. The doctor ordered a CAT scan for the next day (today)
4. the scan was bumped up to 4 pm yesterday.
5. I had to run some paperwork errands to the IBEW during the afternoon and then I was going home to help get the house ready for tomorrow.
But now I needed to be at the hospital to accompany Stan to Regional for the scan.
6. I got the paperwork done, went to Regional, big fiasco there about where Stan could be "dropped" and who was to order the transport for him back to St. Elias.
7. Pete arrived at hospital about 10;45...I had finally left to go home at 10:30....I talked to him by phone at 11.
8. Some time during the night while Pete was still there, he discovered a large pool of blood under Stan's bad arm....caused by the pic line leaking.
9. I just talked to the case manager by phone.... the scan showed Stan's headache is from sinusitis. I WILL look at the scan myself!
10. No word about the pic line and blood yet. Pete and Andy are at the hospital, but I have no answers yet. At Regional in CCU it was manditory that pic lines only be inserted or removed by a certified person. Not all nurses (or doctors) are certified for this. Was the person who removed Stan's pic after last night's bleed certified???
Stay tuned for further developments....and please please pray for us!!
Thank you...
Love, M
I wrote a long email of my concerns, but decided to just send it to myself and not burden you all with it. If anyone really wants to read it, let me know.
I will instead give you a short version of yesterday....
1. I had my appt with the doctor and the case manager. The gist of it was A. Stan cannot go back on pills for his diabetes, but must remain on insulin. B. My concerns about all the meds and the data that says this shouldn't be mixed with that, etc.... was lawyer talk to keep the drug companies from being sued. C. I need to trust the doctor to decide which meds can be combined. D. I need to quit "micromanaging" Stan's care.
E. The doctor thought Stan's head aches were "normal" and did not realize they were just excruiating when he coughed (this was documented by many persons, and many times!)
2. I noticed that his pic line had a little dried blood at the site, but "stopped" micromanaging as per instructions.
3. The doctor ordered a CAT scan for the next day (today)
4. the scan was bumped up to 4 pm yesterday.
5. I had to run some paperwork errands to the IBEW during the afternoon and then I was going home to help get the house ready for tomorrow.
But now I needed to be at the hospital to accompany Stan to Regional for the scan.
6. I got the paperwork done, went to Regional, big fiasco there about where Stan could be "dropped" and who was to order the transport for him back to St. Elias.
7. Pete arrived at hospital about 10;45...I had finally left to go home at 10:30....I talked to him by phone at 11.
8. Some time during the night while Pete was still there, he discovered a large pool of blood under Stan's bad arm....caused by the pic line leaking.
9. I just talked to the case manager by phone.... the scan showed Stan's headache is from sinusitis. I WILL look at the scan myself!
10. No word about the pic line and blood yet. Pete and Andy are at the hospital, but I have no answers yet. At Regional in CCU it was manditory that pic lines only be inserted or removed by a certified person. Not all nurses (or doctors) are certified for this. Was the person who removed Stan's pic after last night's bleed certified???
Stay tuned for further developments....and please please pray for us!!
Thank you...
Love, M
Thursday, February 7, 2008
Day 85
Pete went to the hospital early again and fed Stan his breakfast. He did feel that Stan was feeling better.
When I got there (late for lunch) Stan's lunch appeared to be still sitting waiting for someone to feed him. After I removed the covers from the bowls, I could see that someone had attempted to feed him. I found out later that he kept telling the nurse that he didn't like the vegies, didn't want anymore, etc.
He would try to sleep during the afternoon, but every time he would cough, he would still grab his head and hollar how bad it hurts. He does seem to be "hollaring" a little less as the day went on...so I am thinking the pain isn't quite so bad now. I sure hope so. He did ask me once to hold his eye in its socket while he coughed.
The Case Manager came in to talk to me...per our agreement....and today she was prepared with all the info that I need. It looks like medicare will cover practically all expenses...i.e. a nurse coming to the house one to three times per week, ocupational, speech, and physical theripists, a special wheel chair, bed with trapeze over head, a bed side table like the hospitals use, suction equipment!!, and evan a lot of the little pharmaceudical supplies......sorry, i woke up and found some interesting stuff typed but deleted it until you are older (I'm really NOT going crazy...just sleepy!! I don't care if you are younger and read what I write. Honest... what I had typed was something like k.i.e.k.e I don't know what it was. I was trying to write i.e. and then list the pharmaceudicals.) I had just woke up on the keyboard and thought I should go to bed! I "saved the draft of my email" and then decided to go ahead and finish it tonight...but maybe it will need to wait until morning.
I promised to be at the hospital earlier tomorrow so I could meet with the doctor and get prescriptions, etc.
I'll try to write more in the morning...I'm not sure I will make much sense tonight.
Oh DEAR!!! I started finishing the update at 7:30 this morning (Thursday)...it is now 8:30 and I went to send it....and lost all I had added. I don't think I have time or energy to rewrite what I had to say. Unfortunately, I had said a lot of stuff for my own "benefit" so that I can keep things straight in my own mind. I am getting very frustrated with hotmail!!
It's a good thing I saved the draft of what I started last night...or that would have been gone, too!!
I did mention that I should have just deleted all that "garbledy gook" up there, but then what would you do for a good laugh??
Pete is at the hospital now, feeding Stan his breakfast. We still have lots to do here to get ready for his bed etc, and then for him. So I am not going to try to start over....
Please pray that Stan will be okay to come home Saturday! And that I will be competent preparing him nutricious meals that taste good to him. Thank you so much!
Also, I got an email from Bob yesterday that they have found more "hot spots" on his little grandson...so that the cancer is worse than originally diagnosed...and that was BAD.... so please please make little Darian a huge part of your prayer time!
Love, M
When I got there (late for lunch) Stan's lunch appeared to be still sitting waiting for someone to feed him. After I removed the covers from the bowls, I could see that someone had attempted to feed him. I found out later that he kept telling the nurse that he didn't like the vegies, didn't want anymore, etc.
He would try to sleep during the afternoon, but every time he would cough, he would still grab his head and hollar how bad it hurts. He does seem to be "hollaring" a little less as the day went on...so I am thinking the pain isn't quite so bad now. I sure hope so. He did ask me once to hold his eye in its socket while he coughed.
The Case Manager came in to talk to me...per our agreement....and today she was prepared with all the info that I need. It looks like medicare will cover practically all expenses...i.e. a nurse coming to the house one to three times per week, ocupational, speech, and physical theripists, a special wheel chair, bed with trapeze over head, a bed side table like the hospitals use, suction equipment!!, and evan a lot of the little pharmaceudical supplies......sorry, i woke up and found some interesting stuff typed but deleted it until you are older (I'm really NOT going crazy...just sleepy!! I don't care if you are younger and read what I write. Honest... what I had typed was something like k.i.e.k.e I don't know what it was. I was trying to write i.e. and then list the pharmaceudicals.) I had just woke up on the keyboard and thought I should go to bed! I "saved the draft of my email" and then decided to go ahead and finish it tonight...but maybe it will need to wait until morning.
I promised to be at the hospital earlier tomorrow so I could meet with the doctor and get prescriptions, etc.
I'll try to write more in the morning...I'm not sure I will make much sense tonight.
Oh DEAR!!! I started finishing the update at 7:30 this morning (Thursday)...it is now 8:30 and I went to send it....and lost all I had added. I don't think I have time or energy to rewrite what I had to say. Unfortunately, I had said a lot of stuff for my own "benefit" so that I can keep things straight in my own mind. I am getting very frustrated with hotmail!!
It's a good thing I saved the draft of what I started last night...or that would have been gone, too!!
I did mention that I should have just deleted all that "garbledy gook" up there, but then what would you do for a good laugh??
Pete is at the hospital now, feeding Stan his breakfast. We still have lots to do here to get ready for his bed etc, and then for him. So I am not going to try to start over....
Please pray that Stan will be okay to come home Saturday! And that I will be competent preparing him nutricious meals that taste good to him. Thank you so much!
Also, I got an email from Bob yesterday that they have found more "hot spots" on his little grandson...so that the cancer is worse than originally diagnosed...and that was BAD.... so please please make little Darian a huge part of your prayer time!
Love, M
Wednesday, February 6, 2008
Days 82,83,84
Well....here I am, back with you again. It has been a fulfilling time in many ways, but a very stressful time in others.
I'll start with TODAY (Tuesday).... my blood pressure skyrocketed!! (really!) It is back in control now. I really didn't believe that emotions could really cause it to go up so high.
Pete took Phil to work and then went over to the hospital to feed Stan his bfst. He called me about 8:30 to tell me I should get right down there. I could hear Stan hollaring in the background. I would have gone right then, but Pete told me to wait and he'd call me back. It turned out that an aide had taken his blood pressure on his right arm in the night, even though there are three signs above his head saying NOT to, and he was telling her not to and to read the signs. He developed a really bad headache as (or after) she took his BP...and he was convinced he had a clot break off and go to his head. Pete insisted the doctor come look at him. The doctor told Pete that it would be very unusual for this to happen since Stan has been on blood thinners for weeks now...since the clot was discovered. But in Stan's mind he was put in extreme jeopardy. He was so agitated that they ended up giving him a stronger pain med and a seditive to calm him down. But I became so upset that I felt sick in a weird sort of way. I wish I had taken my BP right then, but I was trying to calm down myself...so when I actually felt a little better and took it....it was 207/110.... !! It took me awhile to get it down to 177/95...before that, I was afraid to drive. It is not a good thing to hear your husband in such distress and be so helpless! (It is okay now!!)
When I did get to the hospital I found Stan sleeping and notes from a neighbor and from Kathy. Both had been there...and Kathy said she had fed him lunch, so I felt better. Pete had left earlier after Stan was calmed down to do the things that he needed to do....get Phil from work and take him to class, etc. He had taken Phil to work so he could have the truck and go to the hospital to work with the OT and PT that morning. Of course, that never happened!
Stan slept for two or three hours...seemingly pain free and calm....but when he coughed, it woke him up and he grabbed his head in pain. He would go back to sleep but always grab his head when he coughed. I ended up having two "heavy" discussions with personnel...charge nurse and case manager. They came to me, and I assured them that I knew that taking his BP on his right arm was no longer "critical" but that to his mind it WAS, and getting him so agitated was obviously NOT a good thing. I still cannot believe the "excuses" the charge nurse made for the aides NOT reading the signs. (I had stopped three other aides over the course of the last two weeks from using his right arm. I would point out the signs and explain why they needed to use his left side.) It really does concern me that there are patients being treated this way. After I had stopped the others, Andy told me that on another patient's door he read a sign that said (in very large letters) PLEASE READ THE SIGNS! Cheri pointed out that there are "staff newsletters" posted in the rest room that have reference to them to READ the signs.... A few weeks ago this could have been a critical error with Stan's life at stake. It could be the same right now for another patient, so YES, I am concerned. There isn't much "sleep in Knowltonville" when I have such fear, but just can't spend 24 hours a day there to keep watch. I will be so glad to get him home!!
I do hope this won't be delayed...but something is WRONG still. All evening he would say, "I don't want to cough. It hurts too much when I cough." He would not be able to stop the cough, and he would grab his head (always the right side over his eye and cheek) and cry out in pain. When the cough would stop, he would settle down. As the evening went on and he would be calmer, maybe even nap....I would wonder if he had a sinus infection or something. Carl came while I was trying to soothe him with a cool cloth on his head. He was so caring and calming and concerned, too. I had to give Stan his meds while Carl was there, and he did calm down some....except when a cough would shake him up. Poor Carl....it was not easy to watch Stan in such obvious pain.
Brian came just after Carl left. He massaged his head and neck some, and that helped. It did seem like his pain wasn't quite as bad when he would grab his head after that.
When the night shift came on, his nurse for the night came in to check on him. We were talking while he slept, and all of a sudden he coughed and grabbed his head while moaning...so she saw first hand what I was telling her was happening. ....OH, he had vomited twice during the day before I got there, he complained about the light, he said it felt like his eyeball was going to pop out of his head from pressure, etc. Leslie (the nurse) and I talked of sinus infection, and then one of us thought "Migraine" ??? He has never had them, but they can start at any age.... His mother and mine both had them, and these are a lot of the symptoms. I have no idea how to diagnose for them or something else, but Leslie started treating him as though that were the problem, and he was calm and settled when I left. He did manage to finally get a lot of gunk up out of his throat, too, though...which stopped the "urge" to cough. I could hear stuff there whenever he did cough, but it hurt so bad to cough, he would stop after one short one...afraid to cough again and get the stuff out. I told him if he could make himself cough it up, maybe then he could stop needing to cough....but that is not easy when the pain is so bad. About 11 p.m. when I was trying to leave for home, he started asking for the suction. I told him the stuff was too far back in his throat and suctioning that far back would cause him to vomit. He worked at getting something up closer by sort of clearing his throat in little "unhs" and so I gave him the suction thing to try himself. He got back a ways and all of a sudden started gagging and up a ton of stuff came!!! So when I left, his throat was "clear" and he had an ice pack on his right eye area, and was sleeping.
So..... I wrote the first couple of sentences Tuesday night...but the rest of this is being written Wednesday morning. Pete has taken Phil to work again so that he can get to the hospital before Stan's bfst and therapy. I am anxious for him to call me and tell me how Stan is doing. Pete spent the bulk of the evening last night at the airport with Andy. They were going by to check on Stan after Andy got off work (2 a.m.)... That is about when I got to bed. It WILL be good to have Stan home!! I am sure we'll all get better and MORE sleep, even having to care for him around the clock.
Okay....back to Sunday and Monday. VERY "dull" days when compared to Tuesday!
Our 24 hour session was to start at seven p.m. Sunday. I actually got there about 11 a.m. By the time I got four boys up and going, and another one needing picked up at ten when he got off work.... it was so late, that I decided to just go to the hospital. Pete, Isaac, and Cannon picked up Isaac's cousin Jake from work and did get to church before the singing was over. Phil was too late to play with the worship team.
An IBEW friend was with Stan when I got there, Carol F. and Kathy both came after church was over and Pete stopped for a minute. The plan was for Andy and Katrina to come watch the game with Stan, while Pete took Cannon and Isaac sledding with Grace, Ashley, and Luke, and Mandy and Shelby. Andy called about 11:30 to say he and Grace were both sick all night so they wouldn't be coming in (from Wasilla). Pete, Isaac, Cannon, Mandy, and Shelby all spent the afternoon sledding at Service High School (there is a great sledding hill there) and Stan and I "watched" the game all by ourselves. The ending was very exciting....even tho the "wrong" team won. It was exciting to get a phone call FROM BOSTON midway in the game. Reggie, who sent Stan the package of Patriot clothing, called to see how we were doing. I did take his picture before the game with the hat on his head and a shirt draped over him, and the scarf lying on his shoulder. I am anxious to see how they turn out.
Carol had crocheted a lap throw for him when he is in a chair at home, and brought him a stuffed ptarmigan or quail that "squeeks." She has bird dogs that Stan liked to "help practice." (Any excuse to go hunting is a GOOD one...right!)
Pete and Isaac got to the hospital about 7:30 that night....and our shift began. We changed Stan several times....it is a two man operation, but we did good! We took turns feeding him and giving him his meds. Nancy, a night nurse....who grew up near Knowlton, Quebec!.... made me an excellent chart of his meds and their times and amounts. The nurse in "charge" of Stan that night would get his meds out, I would double check them against my chart, and then I "got to open" them (they are all individually in those little impossible to open packets!), crush them, mix them with warm water, and put them into his feeding tube. He is no longer on any food thru the tube, but he still gets his meds that way. The doctor said he didn't want to remove it for a few weeks, as it is easier to leave it in in case of a relapse than it is to put it back in!
It really is no big deal....nor is giving him shots of insulin. He has 13 pills at bedtime and a large dose of long lasting insulin and something liquid. At breakfast, lunch, and dinner he has tiny doses of insulin and more pills than at bedtime along with potassium and some other liquid. They are administered in liquid form with a plunger thing that I insert into the tube mechanism. If you're curious....come see!
We did fine...passed the "big" change test, even. With a little "excitement" I might add. We had to roll him very far onto his left side for kind of a long time, and when we rolled him back, discovered the feeding tube had come a part and about a cup of his "lunch" was lying on the bed. So clean up continued.... we didn't panic, just stuck the thing back together after rinsing it off, and then Pete reported to the nursing staff. He was told we did every thing just right.... that we weren't the first to have this happen, etc. Actually, I am glad it happened there and not after we have him home....where we don't have immediate availability to ASK if all is well.
We stayed until about 9:30 pm. Monday..... so my 24 hour shift actually went for 34 hours. We had cardio chairs (?) ...recliner like things ... to nap in....when we weren't up caring for Stan.
I tried to write Tuesday morning, but was too upset... I am sorry to vent to you now. Pete did just call and say Stan's headache is better, but that the light still bothers him, and it still hurts when he coughs...just not as bad.
Thanks for listening and praying.
Love, M
I'll start with TODAY (Tuesday).... my blood pressure skyrocketed!! (really!) It is back in control now. I really didn't believe that emotions could really cause it to go up so high.
Pete took Phil to work and then went over to the hospital to feed Stan his bfst. He called me about 8:30 to tell me I should get right down there. I could hear Stan hollaring in the background. I would have gone right then, but Pete told me to wait and he'd call me back. It turned out that an aide had taken his blood pressure on his right arm in the night, even though there are three signs above his head saying NOT to, and he was telling her not to and to read the signs. He developed a really bad headache as (or after) she took his BP...and he was convinced he had a clot break off and go to his head. Pete insisted the doctor come look at him. The doctor told Pete that it would be very unusual for this to happen since Stan has been on blood thinners for weeks now...since the clot was discovered. But in Stan's mind he was put in extreme jeopardy. He was so agitated that they ended up giving him a stronger pain med and a seditive to calm him down. But I became so upset that I felt sick in a weird sort of way. I wish I had taken my BP right then, but I was trying to calm down myself...so when I actually felt a little better and took it....it was 207/110.... !! It took me awhile to get it down to 177/95...before that, I was afraid to drive. It is not a good thing to hear your husband in such distress and be so helpless! (It is okay now!!)
When I did get to the hospital I found Stan sleeping and notes from a neighbor and from Kathy. Both had been there...and Kathy said she had fed him lunch, so I felt better. Pete had left earlier after Stan was calmed down to do the things that he needed to do....get Phil from work and take him to class, etc. He had taken Phil to work so he could have the truck and go to the hospital to work with the OT and PT that morning. Of course, that never happened!
Stan slept for two or three hours...seemingly pain free and calm....but when he coughed, it woke him up and he grabbed his head in pain. He would go back to sleep but always grab his head when he coughed. I ended up having two "heavy" discussions with personnel...charge nurse and case manager. They came to me, and I assured them that I knew that taking his BP on his right arm was no longer "critical" but that to his mind it WAS, and getting him so agitated was obviously NOT a good thing. I still cannot believe the "excuses" the charge nurse made for the aides NOT reading the signs. (I had stopped three other aides over the course of the last two weeks from using his right arm. I would point out the signs and explain why they needed to use his left side.) It really does concern me that there are patients being treated this way. After I had stopped the others, Andy told me that on another patient's door he read a sign that said (in very large letters) PLEASE READ THE SIGNS! Cheri pointed out that there are "staff newsletters" posted in the rest room that have reference to them to READ the signs.... A few weeks ago this could have been a critical error with Stan's life at stake. It could be the same right now for another patient, so YES, I am concerned. There isn't much "sleep in Knowltonville" when I have such fear, but just can't spend 24 hours a day there to keep watch. I will be so glad to get him home!!
I do hope this won't be delayed...but something is WRONG still. All evening he would say, "I don't want to cough. It hurts too much when I cough." He would not be able to stop the cough, and he would grab his head (always the right side over his eye and cheek) and cry out in pain. When the cough would stop, he would settle down. As the evening went on and he would be calmer, maybe even nap....I would wonder if he had a sinus infection or something. Carl came while I was trying to soothe him with a cool cloth on his head. He was so caring and calming and concerned, too. I had to give Stan his meds while Carl was there, and he did calm down some....except when a cough would shake him up. Poor Carl....it was not easy to watch Stan in such obvious pain.
Brian came just after Carl left. He massaged his head and neck some, and that helped. It did seem like his pain wasn't quite as bad when he would grab his head after that.
When the night shift came on, his nurse for the night came in to check on him. We were talking while he slept, and all of a sudden he coughed and grabbed his head while moaning...so she saw first hand what I was telling her was happening. ....OH, he had vomited twice during the day before I got there, he complained about the light, he said it felt like his eyeball was going to pop out of his head from pressure, etc. Leslie (the nurse) and I talked of sinus infection, and then one of us thought "Migraine" ??? He has never had them, but they can start at any age.... His mother and mine both had them, and these are a lot of the symptoms. I have no idea how to diagnose for them or something else, but Leslie started treating him as though that were the problem, and he was calm and settled when I left. He did manage to finally get a lot of gunk up out of his throat, too, though...which stopped the "urge" to cough. I could hear stuff there whenever he did cough, but it hurt so bad to cough, he would stop after one short one...afraid to cough again and get the stuff out. I told him if he could make himself cough it up, maybe then he could stop needing to cough....but that is not easy when the pain is so bad. About 11 p.m. when I was trying to leave for home, he started asking for the suction. I told him the stuff was too far back in his throat and suctioning that far back would cause him to vomit. He worked at getting something up closer by sort of clearing his throat in little "unhs" and so I gave him the suction thing to try himself. He got back a ways and all of a sudden started gagging and up a ton of stuff came!!! So when I left, his throat was "clear" and he had an ice pack on his right eye area, and was sleeping.
So..... I wrote the first couple of sentences Tuesday night...but the rest of this is being written Wednesday morning. Pete has taken Phil to work again so that he can get to the hospital before Stan's bfst and therapy. I am anxious for him to call me and tell me how Stan is doing. Pete spent the bulk of the evening last night at the airport with Andy. They were going by to check on Stan after Andy got off work (2 a.m.)... That is about when I got to bed. It WILL be good to have Stan home!! I am sure we'll all get better and MORE sleep, even having to care for him around the clock.
Okay....back to Sunday and Monday. VERY "dull" days when compared to Tuesday!
Our 24 hour session was to start at seven p.m. Sunday. I actually got there about 11 a.m. By the time I got four boys up and going, and another one needing picked up at ten when he got off work.... it was so late, that I decided to just go to the hospital. Pete, Isaac, and Cannon picked up Isaac's cousin Jake from work and did get to church before the singing was over. Phil was too late to play with the worship team.
An IBEW friend was with Stan when I got there, Carol F. and Kathy both came after church was over and Pete stopped for a minute. The plan was for Andy and Katrina to come watch the game with Stan, while Pete took Cannon and Isaac sledding with Grace, Ashley, and Luke, and Mandy and Shelby. Andy called about 11:30 to say he and Grace were both sick all night so they wouldn't be coming in (from Wasilla). Pete, Isaac, Cannon, Mandy, and Shelby all spent the afternoon sledding at Service High School (there is a great sledding hill there) and Stan and I "watched" the game all by ourselves. The ending was very exciting....even tho the "wrong" team won. It was exciting to get a phone call FROM BOSTON midway in the game. Reggie, who sent Stan the package of Patriot clothing, called to see how we were doing. I did take his picture before the game with the hat on his head and a shirt draped over him, and the scarf lying on his shoulder. I am anxious to see how they turn out.
Carol had crocheted a lap throw for him when he is in a chair at home, and brought him a stuffed ptarmigan or quail that "squeeks." She has bird dogs that Stan liked to "help practice." (Any excuse to go hunting is a GOOD one...right!)
Pete and Isaac got to the hospital about 7:30 that night....and our shift began. We changed Stan several times....it is a two man operation, but we did good! We took turns feeding him and giving him his meds. Nancy, a night nurse....who grew up near Knowlton, Quebec!.... made me an excellent chart of his meds and their times and amounts. The nurse in "charge" of Stan that night would get his meds out, I would double check them against my chart, and then I "got to open" them (they are all individually in those little impossible to open packets!), crush them, mix them with warm water, and put them into his feeding tube. He is no longer on any food thru the tube, but he still gets his meds that way. The doctor said he didn't want to remove it for a few weeks, as it is easier to leave it in in case of a relapse than it is to put it back in!
It really is no big deal....nor is giving him shots of insulin. He has 13 pills at bedtime and a large dose of long lasting insulin and something liquid. At breakfast, lunch, and dinner he has tiny doses of insulin and more pills than at bedtime along with potassium and some other liquid. They are administered in liquid form with a plunger thing that I insert into the tube mechanism. If you're curious....come see!
We did fine...passed the "big" change test, even. With a little "excitement" I might add. We had to roll him very far onto his left side for kind of a long time, and when we rolled him back, discovered the feeding tube had come a part and about a cup of his "lunch" was lying on the bed. So clean up continued.... we didn't panic, just stuck the thing back together after rinsing it off, and then Pete reported to the nursing staff. He was told we did every thing just right.... that we weren't the first to have this happen, etc. Actually, I am glad it happened there and not after we have him home....where we don't have immediate availability to ASK if all is well.
We stayed until about 9:30 pm. Monday..... so my 24 hour shift actually went for 34 hours. We had cardio chairs (?) ...recliner like things ... to nap in....when we weren't up caring for Stan.
I tried to write Tuesday morning, but was too upset... I am sorry to vent to you now. Pete did just call and say Stan's headache is better, but that the light still bothers him, and it still hurts when he coughs...just not as bad.
Thanks for listening and praying.
Love, M
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