Tuesday, November 3, 2009

Tough situation and tough decisions

With BR heavily sedated all the time, I'm falling into a terrible funk. I second guess all my decisions.

Is it time to call the doctor? I've decided yes on this one. I'm told I can call in the morning and get a same day appointment with his primary care physician.

Am I doing enough to avoid pressure wounds? I'm turning him every 3-4 hours during the day, and once overnight, and the process is excruciatingly painful for him. He has one sore on his tailbone that is holding steady at stage 1, down from stage 2 when he was having all the bladder issues.

He gets up for a few hours in the evening, but communication is slow. Often he'll just fall asleep in his chair.

Should I be checking him into a care facility until the Prialt trial in December? I hope the doctor has some advice for me tomorrow.

Should I be going to California next week? Jordan is coming back to care for him, but this isn't the same situation it was over the summer.

I'm trying to stay calm and seek advice from professionals as needed. But when I don't feel what he's feeling, when he has a disease that ends up being the root of so many problems that don't seem to be responding to treatment, it all just seems so futile. I fear we are on a crash course with the ER, and we both *hate* the ER.

Maybe the doctor tomorrow will be the "stitch in time" that I'm looking for.


Herrad said...

Hi Steve,
Hope the doctor can help you tomorrow.
Hate to think of you being in a right old state and no wonder with your darling being in so much pain.
And being so doped up, must be horrible for you, he is there yet also not.
How shitty for you two lovely men.
Hope there is something that can be done to make the month go by easier for you both.
Take it all as easy as possible, one step at a time.
Thinking of you both lots.

Anonymous said...

I am sorry I did not read this sooner.You do have tough decisions and when you want my input, I will give it.You need to go to California because you have a job that is very important.I understand this may be too much for Jordan though.I love you and I am sure you will figure it out. Much love, Dede

kmilyun said...

When I read this it made my eyes water which is about as close as I usually get to actual tear shedding.

I hope the Dr brings some answers for you both.

This f'ing disease really really really sucks for those who have it and I truly believe much more so for those who love us and care for us.
Wishing you both:
Peace, Love, and Joy

Kim said...

I don't have any words of wisdom to add, but I did want you both to know how much you are loved.

Fingers crossed that there is some sort of relief soon...