Friday - First half

I went to bed last night with the wrong expectations--I expected to get some sleep! From 9:00 pm until 6:30 am Tom was up every two hours. At 1:30 am I came out of a sound sleep in response to his tapping on the side of the bed and I would like to say it was because of being sleep (is it deprived or depraved???) but I actually said that I couldn't keep doing this. I felt bad for saying it but I didn't take it back--all I wanted to do was SLEEP! It made Tom feel bad and he wrote on his board the next time I got up (30 minutes later), "I'm sorry" Needless to say that made me feel even worse. Somehow I was able to not be cranky the rest of the night and gave him the kind of care I would want. The problem is that when he has to go to the bathroom he has to go RIGHT NOW so there's no waiting for a nurse to answer the call button. There might be help on the way--talked to a doctor today about it and she is coming back later to try to come up with a solution. I can't believe how well I am functioning today on so little sleep! People must be praying!

Occupational Therapy came to talk about what Tom might need at home. She will come back and help with his first shower.

Respiration Therapy teacher came by and I got a lesson on how to care for the "stoma" (hole in Tom's trach). I'm fine with most of it but putting the tube back in is difficult 'cause I know it hurts. Talked to Tom about it and he said it hurts when it goes in but the pain stops when in. He won't always need the tube but it will be in through this healing process so I gotta get it. He will be back this afternoon to give me another shot at it.

Hospice social worker (Jodi) showed up about the same time. We will be under their care from the time we leave the hospital. They coordinate with our doctors. We will have a nurse on call 24/7 plus a nurse's aid to help as needed. Just because hospice is getting involved it doesn't mean Tom has been given a prognosis for time left. We qualify because he has a disease he is not going to recover from so the important thing now is to make his life as good and full as it can be with the limitations we've been given.

And the day is only half gone!