Sunday evening. This is going to be stream of consciousness with lousy spelling and grammar due to my being tired and possible interrupted by needing to see what's happening with David who is in bed.
David is unable to talk due to the horrible congestion in his throat. It is bloody. I hope that tomorrow's Nplate injection starts to help with platelet formation/reduction in leaky tissues. He continues to cough up big chunks of bloody stuff. He had an X-ray and blood work on Friday. I am hoping for results tomorrow. His home health nurse comes at 9:30 a.m. We have many questions for her. Today he went to bed twice for naps and fell asleep when his friend Fred visited him. His energy level is extremely low. A series of leg raises in bed left him too tired to get up and continue with chair leg raises. His weight is down to 129.2 today because he disconnects himself to go to the bathroom and sometimes forgets to turn the pump off. There are stains on the carpeting that I can't get out so far. I've stepped up the rate of the pump to 140mL/hour and he has no backups into his stomach and out the stoma. I may try to go to 150mL/hour tomorrow to reduce the time that he has to spend hooked up to a pump. He finally got six full cans of Jevity today and I hope that the weight loss stopped.
He is definitely not depressed and I think that most of the effects of the prednisone are gone. He is not angry anymore. I am sad that his body is falling apart. He is having a big problem hearing. Tuesday he sees the ENT Doctor and I'm hoping that he cleans David's hears.
Natalie and Fred visited David today. Fred is unable to talk due to after effects of his stroke and David could not talk due to his congestion. Still they held each other and hugged; they really formed a tight friendship since Fred moved here. Natalie and I share a lot too. Too bad we aren't able to have a usual couples friendship and have sick husbands in common rather than common interests. Than spend time sitting beside David and hugging him. I did too. He has so much phlegm that I am unable to understand what he is trying to say. He wants to see if we can get a suction device to clear his throat like they had in the hospital. Mucinex is just not working and he keeps bringing up huge chunks of junk. That's on the agenda for the nurse's visit tomorrow. I haven't heard from the physical therapist yet and hoped that she could come tomorrow too.
It is now 9:00 p.m. He is in bed for the night. When I kissed him goodnight he hugged me hard. I love him so much and wish that I could find a way to help him get better so that we could have another 15 or so years together. I am so worried that we won't even have another anniversary. This has been a terrible year for him. I don't want him to suffer. He says he is not in any pain and when the nurse or Physical therapist comes he rises to the occasion, tried hard to talk and to demonstrate that he is strong and committed to trying to get well. When they go, he dozes off. He has not checked email, read Facebook or played with the new MacBook Air once he verified that he is able to print from it. He was happy that I got him audible books that he is able to hear using it but after listening for an hour turned it off and is not interested in trying it again. He barely watched the NC/Kentucdy game that was extremely exciting and went to bed rather than watch 60 Minutes.
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