Friday... quick update

I went to work this morning.. Chris never called me back last night or during the night... so I assumed he got to sleep...
I called the nurse station in the morning to see how his night was and who his nurse was during the day today
Nicole, the Wed/Fri head nurse, who I love, spoke to me...
She said they would be sending in a psychiatrist soon to talk to him... he is clearly depressed and they want to see if they can manage it...
They are also sending in neurologists for the tremors...
Rose is his nurse today & I also talked to her... the morning was quiet. He only had 1 or 2 bowel movements but he also had them overnight
Nicole told me that they got him to sleep last night .. whatever drug they gave him worked
I am now learning that the did NOT put him on a new GVHD drug yesterday, even thats what i was told yesterday when I asked... what they gave him yesterday was a replacement for the cyclosporine... I keep getting told they are thinking of doing this.. they might do that.. blah blah blah.. and then when they add a drug, I ask for clarification and I cant even get the correct info

Rose told me someone else wanted to talk to me and she put Sharon on the phone... She had checked on Chris and he was sleeping.. she told me that she had seen all the doctors in there yesterday and Anne.. which I was aware of... but I dont understand why the nurse cant give me a reason why he is on a drug if its pretty simple...
I asked Sharon if she had heard about whether he was 100% the donor or not, and she said she heard Nancy saying that yesterday. It sounds like Dr Sedov was near her because he told her that that was not back yet. no final on the bone marrow biopsy yet. Sharon relayed that to me.. so now we are still waiting for that

The new drug is the drug he would have been sent home on (Cyclosporine is IV at the hospital.. they are sent home on an immunosuppressant... so thats not a huge deal... ) they made the change now because the cyclosporine might have been causing his recent tremors...

They also stopped the cymbalta a couple days ago because that also might have been causing tremors..
I got here after work by 530pm..... and found out that even though Nancy mentioned a new psychotic drug yesterday, he is indeed not on anything yet... they want to see how all the changes in meds work before adding yet another drug.... I understand.. it seems the tremors were putting him over the edge the last 2 days.. so if they can control those, he might not need any anti-depressant..
They added Neurotin (which he has taken before)--- should help the tremors since they are a neurological thing... and they changed his blood pressure med... he was only on it to slow down the heart rate since it was high during pre-transplant chemo.... but they changed it to a new one which could help with tremors...

He got a 3rd dose of remicade today (that weekly one that is for graft vd host.. to try to stop the diarrhea from the graft vs host in his GI tract)... So it looked like what Anne said Wednesday is what they are doing... waiting to see how this 3rd dose works before adding another graft vs host med...
Its frustrating because the nurses mentioned drug "such and such" and i cant keep track of them all.. so when they mentioned "oh i hear they might give him this" or "oh they are going to add another graft vs host drug sooner" and then i ask if it happens, i cant remember the name of the drug that was thrown at me.. and it sounds like there is also another anti-diarrhea med that is out there too.. so i am not sure why they are waiting.. but i guess thats good if they arent urgently adding more drugs...

Chris was in good spirits when I got here after work. He told em Dr Strair gave him a reality check and told him basically that he could stop treatment, give him dilaudid to make him zonked and sleep.. and let him die.... OR we could continue with the treatment to figure out the graft vs host and work on getting him better. Chris seems to have things back in perspective and chose to try that living route. Good...
I asked Rose if he had a lot of bowel movements and she said yes. She said it was watery and a lot... She wasnt his nurse for 2+ weeks so I have no idea what that means in comparison to the last few days... I didnt get very far with asking her for that info.. So Nicole looked up the day for me and said she saw 2 bowel movements at 11 and 12. Rose might not have charted the others after that, if there were more... but i think he had one around 730am when the shift was changing... its very frustrating because i dont know if they are remembering to chart them all even though the supposedly are.. and i cant get a clear answer on the amounts and better vs. worse because some nurses dont take care of him as often as others so i cannot gage.. ugh frustrating.. Liz & Nancy are back on Monday )off for the weekend

He was up for an hour talking to me and then started to dose. Which is good... Sleeping without suffering from discomfort is good
He also had a good day with physical thereapy.. they said they were impressed with his progress and he (with help) took some steps to the chair.. and they worked him out...
Yay!

I also suggested to Nicole that it might help his depression to get him out of the room even if he isnt walking.. maybe in a wheelchair around the halls.. she thought it was a good idea...
She said maybe Strair would let him go down to the lobby and sit by the fireplace for a while
So, I ran it by Chris and he seems happy about the idea.. maybe getting out of the confines of the 4 walls will help him a lot...
Too bad no one else thought of this.. they all do know he is going stir crazy from being in the room for over 2 months... Maybe I should be a shrink or therapist... sometimes i just dont understand why they dont take action quicker since they are much more experienced with people who are stuck in the hospital like him... I dont have time to think of solutions when I am busy working and running around and worrying about his health... ugh

anyways... he is sleeping now.. i am not sure how long i will stay.. i am relaxing with a book and my laptop.. and he is "ok" and sleeping... but i want to get here early tomorrow to try to see Dr Strair...

thats about it... his vitals are all good.. blood pressure good.. temp is 97.4... pulse ox is good.. he is sleeping soundly... very nice...

talk to you all later
xoxox jenn