Day 13 Post Transplant - 22 days in Hospital

Woke up at 2:00 AM and was wide awake. I thought that I would call Jim's sister Nedra who was sitting with Jim. He had his treatment at 10:00 so I knew she would have just been getting back into his room. So, my ears must have been burning because she was debating on whether she should call me. Yesterday I blogged that he was fed up. Well apparently after treatment and before she got in the room, they did not restrain his hands. He had had enough and decided to pull out his breathing tube and feeding tube. So, when she got there they were putting them back in him. This is a big deal because they inflate a balloon at the end so the tubes stay in. Pulling the breathing tube out could have caused much damage. I was very worried about bleeding (because platelets are low) and very worried about damage especially to his vocal chords. They knew right away that his vocal chords were ok because he was screaming at them and demanding they call his wife. Apparently he did not think they were giving him good enough care. We are lucky because there does not appear to be any damage and bleeding was minimal. Nedra said after that he was very agitated and did not sleep any more than 20 minutes. Poor Nedra!

Since I have been here at 9:00 he has done nothing but sleep. Magic! Give him something for his anxiety, put his ventilator settings to help him be comfortable and he will be an angel. I think the staff has been too caught up in ICU protocols and trying to wean him from the ventilator or his anxiety medicine. But, they forget he is a bonemarrow pt and has to breathe through a straw for 2 hours 3 x a day. It is exhausting for him to just exist right now.

So, I am going to rounds today and I think the staff is going to get a "come to Jesus" talk. The bonemarrow doctors were not happy at all and asked me to come. Up on the bonemarrow floor they give you whatever you need to be comfortable, but in the ICU if he says he can't breath they tell him he can it just doesn't feel like it. So, my priority is to convince them that they need to not worry about the protocols but give him "whatever" he needs so that he can get through these 3 more days of treatment. He is not a "protocol" case anyway. If he was agitated enough to pull out his tubes, they are not doing their jobs. Now they are not getting rid of his wife at all. Pity for them. It is interesting, sometimes I think that Jim did not always appreciate my feisty side, but now I know that he not only appreciates it but relies on it. He holds onto me and relies on me like I am his lifeline. I can't imagine how helpless he must feel. He is pretty mad at me though. I think he feels like I abandoned him last night. I told him if I could forgive him for scaring me to death this week, he could forgive me for going home. He smiled.

So, just got back from the meeting. The ICU staff did agree to take Jim off of "Ventilator Protocol" and increase his meds for anxiety. I found out that the tube he pulled out was pretty clogged with the RSV medicine, so it was probably a good idea he pulled it. Also, they are looking into giving him the treatment via pill or IV now that he has had several days worth of treatment. He gets another treatment at 2:00 and has 9 more after that. I really hope that he can get the medicine another way. Then they can begin to wean him off of the ventilator. The bonemarrow doctor told me he is doing so good bonemarrow wise that if he didn't have the RSV he would have been going home.

Jim's brother Bob who has been in Spain on a mission came home last night. He is on his way here to surprise Jim. That will be a fun surprise.

Today I AM THANKFUL FOR a connection with my husband and Heavenly Father that allows me to wake up at 2:00 in the morning when he is in distress. (At least I think I am thankful for that).