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

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

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

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

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

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

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

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

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

Day 81

The first Saturday of the month, the men of the church here get together for breakfast and fellowship. "Today" (I am writing Saturday's update on Sunday morning) the breakfast was held at the Golden Corral restaurant instead of at the church building. The GC is just a block behind Stan's hospital!! I had stayed home so Cannon could sleep and Pete could go to the breakfast. He, Brian, and Isaac enjoyed the time, and afterward they went to see Stan and feed him lunch.

Most, if not ALL, of the other men also went to see Stan. What a wonderful thing for him to be included in that day of fellowship. He often made crepes at the church building for the men's bfst.

I didn't get to go until Pete got home to take care of Cannon. When I got there, Brian was helping give Stan a bed bath. Tonight Pete and I start the 24 hour care time. There is a recliner and they are bringing in a cot. We are not expected to stay awake all night, but to be there to hear him and take care of his needs as tho we were home.

If all goes well, he is coming home on Saturday. I still don't know the logistics of that move..... TransCare, ambulance, or just what and how????

The rest of the day after all that excitement was pretty quiet. His dinner was "unedible" ...really. And very light. He does not like tea, but they keep sending iced tea with thick-it....no lemon or sugar, etc...and it is pretty gross tasting. There was no fruit or meat, just pureed squash and macaroni and cheese (which I had to ask what it was....I couldn't identify by sight, taste, or smell!), and some left over from yesterday cauliflower soup. He gagged on it and threw up a little and I know it was because it was so unpalatable. So after just a few bites, I got some tomato juice, which he loved. I had fig Newtons there for me, and I chopped one up and fed it to him. AND then gave him 1/2 of a small truffle. Not the best meal....I am sure he went to "bed" hungry. Where are the tube feeding and milkshakes when you need them???

Applebee's have their buffalo wings half price after nine p.m. Since I hadn't eaten since bfst, when Pete and Cannon arrived we went there for some dinner. I knew Isaac really liked the wings, so we got enough to take a bunch home to him. A basket is usually 8.50....and we got ours for 4.25......not bad, huh!!!

I felt guilty eating when I know Stan was hungry. Hopefully, they'll give him more juice in the night.

Cheri made it home fine. We DO miss her!!

Please do continue to pray for Darian....Bob and Connie Bowers' grandson. He starts chemo soon, and it sounds like he will lose at least a part of his leg. He is only five years old. Bob grew up in Coos Bay, OR with Stan and me. In fact, he sang at our wedding.

I will be "decking" Stan out in his Patriot loot and taking his picture today. Andy and Katrina are planning on watching the game with him (if only the Packers were playing the Patriots!! Poor Katrina....) while the rest of the guys go sledding. The weather is gorgeous.....blue sky! But VERY VERY COLD!! It was -5 last night at ten. The news predicted as much as -20 in some areas over night. I don't think it is a very good idea to take two year olds sledding in that temp....so maybe they won't get to have the sledding party. We do have the snow!!

I need to start getting the boys up and ready for church, so talk to you later!

Love, m

Day 80

Hmmmmm....it's been proven that you can go around the world in 80 days.....before jets!! or space ships... in fact, I think the shuttle goes "around the earth" in four hours!! (Seems like I read that once, when they were just orbiting us...the astronauts were seeing something like six sunsets and sunrises each 24 hours!)


Today was a pretty quiet day. I fed Stan lunch and dinner, and I think he mostly slept the rest of the time. I did have to leave at 2 to take Phil from school to work....except just before I got to the university, he called to tell me that Kacee would take him.

So while I was out and about, I decided to run another necessary errand. I took my car to Paul's Body Shop for their initial "look see" so they could order the parts to fix it. "Paul" (I assume he is the Paul of Paul's Body Shop) said he trained the estimator at Allstate, so he was sure he was pretty accurate... but he checked the car out, got the paint number, etc...and said he agreed with the Allstate guy. He will get the parts from Honda and give me a call to set up a day to repair the car. While it is in the "hospital" I am going to have some more surgery done on it. Someone threw a rock at my windshield last summer and cause it to crack....a small crack, but bigger than a chip. However, all this cold weather seems to enjoy playing "crack the windshield bigger" so it is a pretty sick windshield now. This I will have to pay for, of course, but it will just mean ONE trip to the hospital for the car. They don't do windshields, but they do TRUST one glass guy to come work in their shop when a car is there for repairs and needs a new windshield. It will be good to get it done.

The Case Manager came in to see me again today. When I set the date for our 24 hour stay over, I specifically asked the person to let "Linda" know... but no one had. She is going to have all the information for me on Monday....What medicare will pay for/provide/etc...and any costs to me...and where to get what I might need that they don't provide....etc etc

Birdie, Stan really likes those truffles. I've just been giving him about half of one each dinner time for his dessert. Laura and Sara S brought him another box of them yesterday....so he is well supplied. Anymore than half of one would get me into trouble, I am sure. His blood sugars are too high....meaning he gets an insulin shot several times a day. But he needs a "little" chocolate.

The pureed pasta tonight was so gross, I figured the truffle could be his carbs instead. heehee

I haven't heard if Cheri got home okay...but in this case, I am assuming that NO NEWS is GOOD NEWS!!

I'm not getting much done on the house part. I better concentrate on getting more sleep tonight and tomorrow night so I can be up for the 24 hour thing.

So.....good night all!! And thanks for listening! (and praying!!!)

Love, M

Day 79

It was very emotional for Stan to say good bye to Cheri. Pete "propped" him up later, telling him it wasn't going to be the last time he sees her. She'll be back! We are all so glad she was able to come.

Kathy learned that Cheri enjoyed beading and brought a "ton" of beads to the hospital for her. Someone had given them to Kathy, who will "never" bead.
heehee.... Cheri invited Katrina and Ashley to share with her.........so there will be a lot of beading projects going on in the Knowlton family!! We sat around a table in the hospital dining area and "divided up" the loot. (Hospital dining rooms are certainly useful areas!)

Stan continues to help me feed him. He loves having the little boys around. He plays catch with them....and the big boys and girls, too. It is amazing how adept he is at tossing the ball toward the person he chooses. He just doesn't always warn us when he is changing "receivers." (Hey...I just used a football term! Must be getting ready for Super Bowl!)

Pete and I plan to do the 24 hour care thing starting at 7p.m. Sunday to 7p.m. Monday. We couldn't do it Friday because Pete wants to attend the "dangerous men's breakfast" on Saturday morning. Ditto for Saturday, because we'd have to miss church on Sunday. Mostly what I need to learn is schedule and amounts of meds.......

There continues to be lots of reasons that I can't wait to get him home. It is so difficult to see him uncomfortable or just plain hurting because someone isn't aware that certain things need to be checked. I.E. last night his "stomach" hurt. I found his "britches" pulled so tight he could hardly breathe. And earlier, I found his "bad arm" tucked in such a way it could be injured, but he couldn't really feel it to tell anyone. The nurse last night who gave him his meds in the tube did so by "gravity" which is the right way to do it. But I have watched many many give them to him by "plunging" them in to the tube. I remember a nurse in Regional saying they should go in by gravity....but this takes a lot longer, and help is "short." So, I will be glad to have control over these kinds of things.

So....that said, I'd better get the house ready to receive him! (Rick E. is going to take me to meet and visit with a dear wife who has been caring for her husband for over 15 years. I know she will have invaluable info for me.)

Love, M

Day 78

I had exciting news today! The Case Manager came in to talk to me. I am supposed to choose one of the family to spend 24 hours with me doing all of Stan's care at the hospital so they can be sure we know what to do for him when he goes home. She then asked me, "How about Friday?" It was exciting and shocking. I thought she was saying he would be going home then, and I have to get the house ready for him...including equipment, moving furniture to make a place for his bed, etc. It is my goal, but impossible to do those things and be at the hospital more than 12 hours per day, too. I had been trying to get my "ducks in a row" and felt like I was spinning my wheels. But then she told me that SHE would put in the order for the "cherry picker" lift thing and a bed. I had no idea I would qualify for the lift or that medicare provided a bed. This is great news, and I am assuming they will be delivered...which will be very nice. I need to get BUSY right now and clear out the living room for him. Hallelujah!! She said that it would be about ten days before he will be discharged. Amazing, huh!!!

I am not afraid of what his care will be....but am apprehensive about doctor visits. She did tell me that Transcare is a good source for that for just $35 per trip. I need to talk to Pat Watkins about how they manage these things. There is so much I do not know!!

She also told me that a nurse would come once a week to check how he is doing, and that I could have Home Health Care come to help bathe him, etc.

I know he will be glad to get home, and I will be very glad to not be leaving home everyday.

He is doing very well with his eating. I learned that he is now off the tube feeding at night, but the tube may stay in for me to give him his meds. I do hope the pic comes out of his arm. I don't think he will be having blood drawn regularly at home. I know all too well how to check his blood sugar levels.

I did have him wear his teeth during dinner, even tho the food was pureed. We were told his gums would change and they wouldn't fit anymore if he left them out too long. I don't want that to happen....and neither does he. He was willing... He doesn't like them mostly because he bites his lip.... but he was doing that before the stroke, too.

Cheri leaves tonight. We will miss her, but we are so thankful she was able to be here and know how her dad is doing. He got teary, already "missing" her. He really relaxed with her foot rubs.

He keeps saying his hip is "out of place." I know it hurts, but I think he heard James tell me how to turn him on his side...and cautioning me to not pull on his leg a certain way or it could pull his hip out of place. It is only since then that Stan has been saying this. I am trying to think up a way to roll him on his side that will be "kinder and gentler" than how it is done at the hospital, because it does hurt, and it has to be done every two hours...plus when he is changed...so it is a lot of pushing and pulling.

The heart is still intact out his window....and I think the pictures I took yesterday will turn out very well. Before the gray sky made the snow look rather flat, but the sun was out yesterday and the heart stood out clearly.

Oh.... I fed him one of Birdie's truffles after dinner last night.....he said it "melted in his mouth!" Thanks again, Birdie. And then Brian brought him a chocolate malt shake from the DQ....and he drank about half of it.

Heehee...when the nurse last night was showing me how the feeding tube works, she said that I needed to make sure stuff didn't set in the outer tube and clog it up. Then she said if that happened, a good way to clean it would be to use some soda....like Coke! Does anyone think he'll object to THAT???

Love, M

Day 77

This is the day Stan ties his brother Danny's record for being in the hospital. We weren't really trying to have a race!! I just hope that one day he will be able to walk as good as Danny. Danny is definitely another of God's miracles!!

He didn't hold his head up as good as some days, but it was much better than yesterday. I was able to feed him without having to hold it up at all. When we told him we had to go get something to eat, he "ordered" a chocolate milk shake! He got one, and he ate between a third and a half of it. And he ate all his dinner, too.

Trivia: we know four Mandy's... his two visitors today were two of them!! (The other two are relatives who live in other states.)

Wow...I do believe that all the staff has seen our big heart in the snow!! It is still there, and I hope my pix turn out okay. As soon as I take a picture Cannon says, "Can I see?" and "Show me!" heehee.... I am still using a 35mm camera, not a digital. When Ashley was his age and I took her picture, she would say, "Okay, Grandma. Let's go to Costco!" (She "understood" we had to get it developed, but didn't understand we had to finish the roll first.)

We were told a big bull moose was running around outside Stan's window this morning. We missed him, but the nurse said she was worried that he would wreck our heart!

Stan continues to "whisper" to us when we are in the room, unless we really beg and "badger" him to use his big voice. But when Uncle Don called today.....he said, "Hi Uncle Don" as loud and clear as anything!! Aha...so now I know he still CAN!! It is hard work, tho. It takes a lot of energy to get the sound out...I guess because he wasn't able to use that part of him for so many weeks. I hope and pray that some day he'll be able to use some of his left side! He is getting very good with his right hand. I would like for the boys to try to get him on his feet...holding on to him, of course. The hospital won't allow it because of liability.

Andy, Brian, and Pete stayed with Stan later tonight, telling Cheri and me to go home early...so here I am writing before midnight!!! I was hoping to go to bed early, but have one more load of clothes to take care of first.

It was good to "talk" to you all with out falling asleep, tho. Hope you enjoyed it as much as I did!!

Love, M...
News Flash for those CCA folk who remember John and Kim Buening! They had a baby girl January 28 ...Faith....weighing in at 6lb10oz. and 19 inches long. She was born in Germany where they are stationed now. She joins Big brothers, Wil (born in Anchorage, and Kim says "Proud of it") and Jack, born in Illinois.

Day 76

Stan was up in the chair when we arrived today. I had to feed him his lunch that way, which was difficult. For some reason, some days he holds his head up really well and other days NOT at all! Today was one of the "not at all" days...so Cheri and Pete helped me hold his head up while I fed him. He did take one bite himself, holding the spoon...but it was too difficult in the chair. At dinner he managed a few more that way, but he was still not holding his head up.

We had to be gone for a couple of hours in the afternoon. I had an appt. to get the car estimate done from the rear end collision. I was amazed at the low cost estimate. The bumper and cover both have to be replaced....and it was under $800. I didn't think any thing was under a thousand these days.

I just spent an hour looking for a bunch of cards I bought the other day.... birthday, sympathy, and valentine cards....and I need them!! I hope they are at the hospital.....

When we got there this morning, the first thing Stan said to me was, "I haven't seen you for days. Where have you been?" I told him I didn't leave last night until almost midnight!! He was sound asleep when we left tonight, so I asked the nurse to tell him I'd be back in the morning.

The blue sky was gone today. A very gray day with more snow replaced the sunshine of yesterday. I tried to take a picture of the heart. It actually showed up better when it was getting dark. The gray of the day seemed to flatten out the snow so that nothing showed.

We were able to move Stan in the chair close to the window so he could see the heart.

At times today he spoke up very clearly and loudly, but most of the time he used his whisper voice. James asked me if I was taking him home on Thursday. He mentioned that I had ordered all his meds. I was totally confused....but then James decided he was thinking of the guy in the next room. I do need to get prepared, tho.

A new OT did some interesting things with his arms today. We'll have to work on the same movements. He was too sleepy, had just got back in bed from being up for a couple of hours in the chair which is exhausting for him. So she decided to come back in a couple of days and hope to time her visit better.

Our weather has warmed up. Not to the melting point, tho...thank goodness!

Love, M

Day 74 & 75

I was 2, to, two, toooooo tired last night to write. I meant to write this morning, but chose to get to church on time instead.... Pete said, "Come on, Mom. You can write your update at the hospital this afternoon." But of course, that didn't work for a variety of reasons. So, here I am!!! Combining two days. Not such a bad idea, huh!!

The biggie for me yesterday was during Stan's dinner. I filled his spoon with food and then put the spoon in his hand and he directed it upright and immediately to his mouth. After doing that a few times, I started holding the spoon out in front of him, and he would reach up and take it himself. This is a HUGE improvement from just a week ago when the OT struggled to get him to hold a spoon, and mostly he would turn it upside down before he got it near his mouth. Also his direction was off then.

He is sleepy....and his speech is mostly jumbly and "silent" so that he is difficult to understand. He CAN speak up, because he does every once in a while. I don't think the vycodin is still working in him....so don't really know what is going on. Each medical person has a different idea...

Saturday afternoon, John T. joined Stan in a good nap while Paula and I visited. (I think I told you that one time there were FIVE guys named John visiting Stan at the same time. I started to write that there were FIVE Johns visiting Stan...but thought better of it. Sentence structure can be interesting, can't it!!!)

Cheri, Brian, and I left last night (Saturday) about 11:30 p.m. Pete had gone to a hocky game and then across town to check on Isaac at his cousin's house. Earlier he had gone to Wasilla to help Eric and to leave Cannon over night with Luke. I didn't know what was going on....and worried when he wasn't home when I went to bed. Turned out after discovering Isaac wanted to stay with Jake, Pete went back to the Hospital (just missing us!) and spent the night with Stan.

The doctor did come in and talk with me Saturday morning. She told me she had Stan on vycodin Wednesday morning, afternoon, and Thursday. She feels that is the reason for the slurred thick speech and droopy mouth I noticed on Wednesday. But if it were....why wasn't his mouth droopy on Thursday, too?

He remains much sleepier and has just had tylenol for three days now.

After some encouragement, he did speak plainly and loudly for Dave and Katie tonight when they brought him communion.

I didn't get to the hospital until about 1:30 this afternoon. We had the required annual meeting after services. When I got to the hospital, I figured he would be all done with lunch. His tray was sitting on the table, a spoon with a bite on it was on the tray, and all the bowls etc were still full. There was some white looking stuff that is best described to look like lumpy milk gravy. I took a tiny taste, and wanted to get rid of it. I could not identify what it was, but it was NOT gravy! After reading on the lid, I figured out why I was tasting lemon in it. It was a pureed cod fish dish. The mashed spuds were too thick to eat .... and cold... It was a rather sparse lunch.... There were peaches that he did eat...so I got some of his pudding, and asked a nurse if there was any more packets of the protein stuff the nutritionist wants him to eat. She found me some, so I mixed it in the pudding, and fed him that. (John H. brought him the pudding Friday night, and Saturday when the nutritionist said he needed more protein, I mixed it in the pudding, and that made it very edible. Good thinking, John! And another example of God knowing what we need before we do.)

After his lunch, we were deciding where to eat our own meal, and kept adding to our number.... There were eight of us who finally congregated at Lone Star Steak House for an excellent meal and great company. (great "wanted" me to spell it gore.. but I caught it just in time! But it reminded me of our "table talk." How in the world we got on some of the subjects, I'll never know...but one of them was cannibalism, another was having to lance your own ear drum, and there were at least two more just as "gory"!! What a group to eat with!!) The eight were Kathy, Kacee, Phil, Jake, Isaac, Cheri, Pete, and I. Mandy picked up Pete, Isaac, and Jake after dinner...took the boys to Jake's house, and she, Shelby, and Pete went to Wasilla to get Cannon and to enjoy Wasilla church's annual Chili Cook off! Katrina and Ashley both entered it....should have won, but didn't. (that's G'ma talk!!)

Well...back to "after his lunch...." Before we could leave, Kathy sent Isaac and Jake on a "mission." We have LOTS of new snow...all pretty and untouched ... outside Stan's window. The boys stomped out a huge heart, then stomped Stan + Madeline inside it, and then Isaac RAN a much larger heart around the outside of that heart. And he stomped out an arrow thru them. When Jake finished doing his part, he "threw" himself into the snow and made a beautiful snow angel. Then Isaac went around to the top of the hearts where there is a little bank and made three more angels. Of course, I did NOT have my camera...but I will take it tomorrow and get pictures. If the weather stays like it is now, it should not be disturbed!! Cool, huh!! Then I can show it to Stan.

A few weeks ago I bought a soft spongy ball about the size of a croquet ball to rest his left hand on ... Per a nurse's suggestion. Yesterday we discovered if we put the ball in his right hand he can throw it.....as Dave M said, he'll be signing up with the major league soon. He has good aim, and also good control. I can't remember who all he played catch with yesterday, but today he played catch with Dave and Katie, and with Shelby (age 5) and then Cannon and Shelby wanted him to throw it at them when they had their back to him. He would adjust the power in his tosses when he threw to or at them. I think he was "playing" catch a few days earlier, too, but not with such precision and control. Who knows WHAT he'll do next.

He had a good dinner tonight, and I did add another packet of the protein powder to his food. I put a little in each of four foods, and that seemed to be okay. Applesauce, a green vegetable, a light orange colored soup that said chicken noodle, and a dish that said turkey/ham made up his dinner...with orange juice and jello...that he didn't eat. He drank at least three cups of water after dinner!! (I finally remembered to bring a lemon for his water!) He is really thirsty .... his lips get so dry they stick to the straw and to the suction device. I try to keep them moist, but it doesn't last. Mine are, too .... I think it is the weather. The temps have been very cold for two days now, and very dry!

Two days updates combined, I can get a little confused. I think it was today that Pete also massaged Stan's shoulder/neck area with the electric massager that Brian left at the hospital.

Our "collection" of things in his room now consists of a shelf full of magazines, the trout that Eric carved, the Myrtlewood bowl that John H. made him, the box of pudding snacks from John, the satin bone pillow from Paula, his green ball, a "bucket" of toys from our basement "storehouse," a large round container of red licorace ropes from Kathy, a Hawaiian shirt for him to wear on Friday's, the Patriot stuff to wear next Sunday from Reggie, the massage oils from "Tulsa" Audrey, the massager, Cannon's truck from Amy (Hardware Specialties), a case of water (usually, we're out right now), fruit, my knitting (that I haven't touched), etc. This is the stuff we LEAVE there. I have packed my Christmas cards back and forth and / or left them there for weeks. Some are mailed (yep!!) and some will be mailed (yep!)... soon, I hope. I'm still aiming for a January mailing!!

I better "shut up" and go to bed. I'm beginning to wonder if there is anything to the "cucumber slices on the eyes for soothing" thing... Do you think that works??

Love, M

Day 73

Laura (Motsinger) Smith took Cheri and me out to lunch at a neat little cafe. We had good food, good company, and a very good time. Pete stayed with Stan while we "played" and Cannon and Isaac stayed home and caught up on sleep.

It was an emotional day of misunderstandings and I hope "straightenings out".... Stan did bump his head on Wednesday, but I found out that he was given some strong narcotic pain meds that morning, too. They probably account for the slurred speech and droopy mouth.

I will be so glad to get him home so I can get MORE sleep!! Friends at church have offered a hospital bed for his use, so I just need to clear a space for it. The only tube Stan still has is the feeding tube, and I have no fear of it. It would be an easy way to give him his meds....instead of having him try to swallow them.

It is Saturday morning and I need to get going. I was too tired to write last night....we didn't leave the hospital until almost midnight.

Yesterday was another day of clearing at least six inches of the white stuff off the car before leaving. I don't think there is any today!!

Our neighbor used his plow to clear a lot of the driveway and what he couldn't get to, Brian used the snow blower on...so we are in great shape until the next snow fall.

Andy did bring his dad some moose gravy and mashed spuds, along with some finely chopped (VERY finely chopped) moose meat. Stan loved it. Then John H. brought him some chocolate pudding (and a beautiful myrtle wood bowl!) and Kathy finished off the evening with chocolate ice cream. He may gain weight lying there in bed!! (Someone left him a Hershey bar on the TV shelf and he still has a couple of truffles.)

Please don't feed the patient when visiting, however.

There is a beautiful waning moon peeking in my front window at 8:30 this morning. It looks like " 'Twas the Night Before Christmas" poem outside.

Love, M

Day 72

Hooray,hooray...I found the package today!!!

Thank you, Reggie, for some really neat stuff. But you know
"you shouldn't have." I plan to take a picture of Stan wearing
the hat, scarf, and with the shirt draped over him!!

I am going to send this update to you first...and then to the
"rest of the world." I just got home and it is pretty late already.

I spent the morning "fielding" helpful suggestions....by phone and
email...and I really appreciated them all!! I also called the
postmaster's office again, and the lady who answered even called
me by name....!! She was going to check to see who delivered it
and call me back...but I haven't heard from her. I'll need to call
again tomorrow to let her know the lost is found.

On the way to the hospital, I stopped at the mailbox area to talk
to the postman who was delivering right then. I told him that the
package was signed for as delivered, but we couldn't find it. I
also told him that my son had found a "package'sa.....OH dear,
there I go again!!! I was asleep ....

He had found a KEY to a package box, but it wouldn't fit any of them.
Soooooo, he put the key in the outgoing slot for the mailman to get it.

After trying everything else, the mailman today said he had one more
place to look. Then he took off toward the end of the long row of metal
mail boxes. earte (there I go again!! Yawn)

Clear at the end of the row...ours is next to the last at the other end....
he stepped behind the row and there in 'not so plain sight' was another
set of package boxes. AND with his trusty little master key... Voila!!
The package. It was supposed to be delivered to the house (express mail)
but was stuck in a box we didn't even know existed! All's well that ends
well!! And thank you all for your suggestions, and even prayers. I needed
them. It was really bugging me, and I knew that Reggie was anxious for
Stan to have it. He will be the best dressed Super Bowl watcher in Alaska!!

Also today, Katrina got her package, too!! (And brought it in to show Papa!!
and G'ma.) Another friend (thank you, Bill!!) saw in an update that our
granddaughter was a huge Packers fan and sent her ONE COOL box of
Brett Favre things!! Now if only it were the Packers playing the Patriots
in the Super Bowl...would we ever have fun!!

And one more THANK YOU...my friend from Tulsa Cancer Center sent
some natural remedy for Stan's clots....and it arrived, too!! Thank you,
Audrey!! Wow...we are so blessed to have such a massive and wonderful
support group. All your visits, emails, prayers, cards, etc.... I can't begin
to tell you how much encouragement they give to Stan and to me. Won't
heaven be wonderful when we can see you all and give you the hugs we
have for you....I hope we can give hugs there!!!

I do have three prayer requests for you, please. One is the OT. Her name
is Janie, and maybe this prayer request is for me. I need a better attitude
when I am around her. She even pushed my friend Sondra's hand away from
trying to help Stan yesterday. Two: Bob Bowers five year old grandson has a
rare cancer....Bob and Connie need our prayers, along with Darian and his
parents! and Three: my friend Bart lost his brother and has asked for prayers
for his sister in law.

I know we could all list many more, but these three are on my heart right
now, so I thought I'd let you share the need. Thank you.

I need to get to bed pretty soon...before I make any more weird mistakes
in my sleep. I have to get to the (I have to tell you....I almost typed airport!!
I SAY airport more than half the time!!) hospital early tomorrow to help give
Stan a shower. He has his OWN shower now, right in his room!!! I do not like
the sling thing, tho. I am pretty sure it hurt him last time.

He was pretty sleepy today, and also still has kind of slurred speech. We did
learn today that they gave him some pretty strong pain meds and I can't help
but wonder???? I had requested that they stick to tylenol during the day, and
give him the stronger stuff at night if needed...as it makes him sleepy. I didn't
get a good answer as to why he had vicodan this morning.

He did eat 100% of his lunch and his dinner. It is pureed...Pete said that is
due to his request so he doesn't have to chew because it tires him out so much.
But I'm not sure, because that wouldn't cause him to be put back on thick liquids. I'll try to see Maria tomorrow and ask.

We are a LOOONNGG way from the ice machine in the new room! (Also, the
coffee pot! Good thing I don't drink much coffee and Stan drinks NONE.) There
is a really nice "family" room at the end of each floor. There is a "visitors" rest
room a little closer here than the one downstairs.

We will be getting our exercise now. It is quite a hike to his room and a "tall"
stairway for those who need the work out. I like the stairs, even tho my knees
hurt. I consistently beat the elevator by minutes. I am pretty sure it is the
slowest elevator in existance. And this is a brand new facility!!

I had to leave Stan for awhile today. Cheri stayed with him, while I dropped
Pete at the chiropractors and took Isaac to Costco for an eye exam and contacts.
He, Cannon, and I had lunch there afterward (love those Polish dogs!) ....and
then had to clean the car off before driving back to the hospital...because that
white stuff was falling again. One thing Stan is getting to miss....driving in the
snow!!

Friends at church have offered a hospital bed, and I do need to start getting
serious about preparations to bring Stan home. I'm not sure just what I'll need,
but have been trying to "dream up" an invention that I can use to lift him by
myself. Any ideas???

John and Paula got a LONG DISTANCE phone call while visiting tonight....from
Scott in Afghanistan!! Now that is LONG DISTANCE!! (For those who don't
know...Paula is Stan's brother Danny's wife's sister! heehee...lots of 's there,
but how would YOU say it?? We've known Paula since she was a little squirt...
and now attend church with her in Alaska...small world, huh!)

While Stan slept, Grace had the two little ones in the family room, Pete, Andy,
Cheri, and 3 big grandkids shopped, John, Paula, Kathy, and I sat in a circle and
pondered the mysteries of certain Bible questions. Kathy is keeping our minds
nimble with her desire to learn.


The aides came in and did all sorts of poking and prodding...and Stan slept
on...that is why I am wondering about meds!!

Cheri massaged his feet and Isaac massaged his neck at the same time...and
then he really went to sleep!!

Grace and Andy brought in a crock pot of home made potato soup and some
fresh bread from Fred's....what a treat. They set it up in the cafeteria area
downstairs, and while Stan slept, we ate. Then I went back up and did get him
awake enough to eat his dinner. (Luke and Cannon are so cute....loving Papa
and giving him five!)

I hope this wasn't too much about the rest of us.... instead of JUST Stan....

Love, M

day 71

Well... today was different!! Stan got moved...AGAIN! This time upstairs! He is out of ICU now and into a "regular" room at St. Elias. That is because his trach is out and he is off many of the support things. He still has his feeding tube in his stomach, but only gets it at night. Daytime he get three meals a day. He is back on pureed foods and nectar thick juices. I am not sure just why....but I think someone said he had choked on some water.

St. Elias is NEW and the upstairs rooms are just now being opened for use. All the rooms are nice and very spacious. The view from the windows is woodsy on the back side (we were promised MOOSE, but haven't seen any yet) and the front view is another step down care facility with a view of the Chugach mountains behind it. I think we might be able to see our house (our area at least) from the upstairs front windows. We are just a block behind several new hotels and restaurants and across a main thorough fare from Home Depot and Lowes. We had a beautiful sunset out of Stan's new window tonight.

He is in room 214 and his new phone number is 564-3854.

Brian brought their electric massager tonight and worked on Stan's shoulders and neck. He had been asking for it, so Brian left it (behind the TV) so we could use it during the day on Stan.

A big mystery has evolved here. On Jan. 18 ...last Friday...we had a meeting scheduled with the case manager and others. Cheri fell down the steps that day on our way to the meeting and we ended up leaving her and Isaac at the ER of the Native Hospital. Angie and Brian were home, but Brian may have left right after we did. At 1:11 p.m. there is a record of a package being signed for here at our house. Angie is the only one I haven't been able to check with yet. The friend who sent the package had told me the tracking showed it was delivered. I called the Post Office head guy to day and his office faxed me a copy of the signature...I do NOT recognize it at all...in fact, can't really read it. I don't like mysteries unless they are solved (and have happy endings). The package is to ME but is for Stan....it would be nice to find it.

Stan ate pretty good but of course it was "easy" stuff since there was NO chewing. Chewing really wears him out. He did get quite a work over today, besides getting moved, so he worried me a little. His mouth seemed droopy and his speech was "thick." Tonight seemed a bit better. I hope he sleeps well!!

Kathy brought him a frozen chocolate yogurt.... he did tell her he liked Andy's frozen custard yesterday better..........it was the "real" thing, and Kathy was trying to bring him a goody....without the goody part. (it was fat free...maybe sugar sub??). But he ate it all and kept saying how very good it was. He wouldn't have admitted the other, but she asked!!

Stan and a couple of the male aides do have fun together. James told him today that HE makes it fun to come to work!!

Love, M

Day 70

Even I am impressed by that number!!!

It is easy to forget the "big picture" when you are living so close to it every day. His nurse tonight is Dave....who hasn't been here since his first few days. When I said something about Stan's talking, he was surpised he COULD talk. Believe me! Talk, he can do!!

Today Stan was "beat up" "pummeled" "pushed this way and that" "thrown around like a rag doll" etc...these are his words. I think he does feel that way....some of it could be done much gentler, but mostly it is done with care by caring persons. But to be helpless and have to endure whatever is dished out must be difficult. Especially for someone used to DOING things.

I did notice a difference in the tone of the OTs voice and mannerisms shortly after I arrived in his room today. That made me glad and sad. We have heard the way some of the employees speak of other patients, and wonder how they speak of Stan in our absense. Many of them seem to really like him and do treat him with such wonderful gentleness and care....and joke with him, etc. I don't know what to think. I did suggest he try to endure the OT and not respond with negative comments...in order to teach her God's love. He has said more than once she barks out orders like a drill sergeant. Janice (a friend) did say today that she wished her son's therapist had been more agressive with her son....that she is sure he would have progressed faster. (He was badly burned in an accident.)

We are trying to encourage Stan to "try harder" so he can come home. He is still in what is considered ICU here. But his medical needs are reducing rapidly....so hopefully we will figure a way to have him home soon.....which is a relative term, meaning maybe 3 to 5 weeks??? He did get the bandage off his trach hole today...and it does look good. Katie is the only one who took me up on the challenge, so I guess I'll need to clean that suction thing good and proper before presenting it to her!! I think she was pretty close to "right on," too!

Andy brought him a chocolate frozen custard today. I fed him about ten bites, and he loved it. I hope that was okay. They did "regress" him back to thick liquids today....something about aspiration worry.... I don't know if something happened. I didn't think he took straight water very well, but the small sips of coke didn't seem to bother him. He would only have about five sips a day.

He is sleepy a lot during the day, and they take that as a sign he isn't strong enough for long therapy sessions. They do tire him out, but the sleepiness comes from NOT getting enough sleep, too. When you are constantly being turned, repositioned (very important, of course), poked, fed, pricked, given meds, blood pressure taken (he said to go ahead and take it....he was tired of it), you don't get much chance to do more than a quickie nap, if you're lucky. None of the deep sleep that the experts insist we need. And added together per day, I doubt he gets any where near 8 hours. The turning, to him, would constitute a lot of exercise. He does get very tired with his therapy sessions and his eating.

But in all fairness, the poking, prodding, and moving are very necessary for him to improve enough to go home. Even tho there are times I wish he could be treated more gently, they mostly do treat him like a real person....

He is being "threatened" with another shower tomorrow. This is a very difficult procedure for him......it is for the aide and me, too....but way more for him. I really think he may have bruised a rib last time. That sling is very tight and unforgiving...he can't move himself in it, of course, so if he is hurting or uncomfortable... c'la vie! (I do need to look that up....not sure I've spelled it correctly...French for "that's life"! Maybe C'est la vie.....that makes more sense.

I sound very complaining tonight. I don't mean to be.... he is making such great progress, I THINK! He did manage to take about four bites of fruit cocktail BY HIMSELF today with the "drill sergeant" monitoring him. He does complain a lot that his right thumb hurts. I wish there was a way to know exactly what is going on there. She even had a velcro strap with a loop on it to hold a spoon that she placed around his hand...to try to take some pressure off his thumb. It didn't seem to work as well as holding the weighted spoon.

I need lots of prayers to decide what to do about our living quarters, and other preparations needed to bring him home. I need to start to prepare NOW. So thank you all for your prayers on my behalf!

Love, M