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