"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
Saturday, February 9, 2008
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
Sunday, February 3, 2008
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
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
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