3 day update. Chris tells me to go home so we can both sleep.. but called me at 1130pm very sad :(

OK...

So I went to the hospital Monday during my lunch. Chris tells me that the doc is talking about rehab before he goes home... physical therapy people came and evaluated him...

They feel he needs to be a lot stronger before he is home.. they want to make sure he is walking around before he goes home so he isnt in bed all day..

Makes sense

However, I am confused because he is supposed to be in such a sterile environment.. how can they just put him in rehab?

Well, anyways, I decide I will ask all those questions later...

After work, Chris was up and feeling good... We hung out until late at night and things were looking good.. he told me he wanted to help me go through all the mail and bills that have piled up and that we would go thru them after work tuesday... So i mentioned maybe sleeping there tuesday night... he was down with that..

But listen to this... Physical therapy never came Monday at all... now i am mad... how can you say he needs it so bad. needs rehab.. and skip him on monday.. bullshit

Karen, his nurse from Sun/Mon says she will mention to Mary Kate...

So, now i need to sleep there tuesday night .....I also wanted to be able to catch the doc in the next morning and ask more about whats going on and timeline and all that...

So, Tuesday comes.. I called Chris in the morning and he was feeling good... he had a good night... no bowel movements monday night.. so it was only 2 in 24 hours...

I told him i was running late and would see him at lunch and then sleep there like we discussed...

He sounded great...

I got there at lunch and Mary Kate sees me and tells me that she talked to Elena, the case manager nurse, and that they are working on making sure physical therapy is never skipped again.. whew.. finally

Chris is cool.. says that the therapist came to see him and would be back at 130.. i was gonna leave to go back to work by 115...

he is in a good mood... I went back to work

After work, i ran home to shower and grab clothes for overnight and for wednesday work.

I get to the hospital.. my brother had visited and told me chris was having bad tremors :(
He is obviously not wanting to go thru bills or much of anything...
He falls asleep and I read and eventually went to bed
Overnight, he had a few bowel movements ;( ugh
He is not happy in the morning because he didnt sleep well and because he has the tremors

Wednesday before leaving for work, I saw John the social worker and Elena... John told us he would work on seeing if they could help expedite Chris's long term disability application... he desperately needs that... and Elena worked out physical therapy consistancy
I went to work

After work Wednesday, I went to see him
Karen the nurse tells me he has 4 bowel movements and some blood in them :(
This means there is bleeding somewhere in his GI tract... but they tested for clotting factor and he is ok
There is talk of a new Graft Vs Host drug
They stopped the cyclosporine and the cymbalta (both could be causing tremors)
Chris was feeling sleepy so I went home by 930pm...

Thursday morning I wake up (today) and there was snow on the ground and it is still snowing
I called Chris and he answered. I was driving to work and it was taking me forever. I said i was just gonna go to work since the roads were bad...
Nancy is his nurse ;)
I talked to Nancy during the day and he only had a lil blood today and they would be starting a new graft vs host drug... and a new psychotic drug :( ugh.. but he is obviously depressed right now.... he wants to feel better.. he wants to go home
He did do physical therapy.. so thats good

I went to see him after work today and my parents were also on their way to visit
He told me when I got there (in a groggy voice) "you should just go home and sleep.. Dr Strair gave me a reprieve" i was confused so I went to talk to Nancy..
She told me he just wanted a break.. wants to sleep... ugh
So, Strair said ok.. let him have benedryl and ativan... so he chatted with my parent for maybe 10 minutes and told us to go home... i was sad cus i dont get to see him all day.. but its ok... i just wish i could be there to hug him whenever he wakes.. so its very hard.. i need sleep too.. but he's been down lately and he asks for hugs often.. i know he wants them... awwww
Ativan is making him a bit loopy but as long as he sleeps

Nancy told me that they will reevaluate.. but he needs an immunosuppresant... so cyclosporine either needs to go back on or be replaced
I think he had 3 bowel movements for nancy all day
Nancy also said someone told her today that he is 100% the donor, but she cannot remember who... so now i need to ask to make sure that is correct

Anywyas, Chris asks for a hug.. my parents leave.. i leave...
I just want the diarreha to stop... and of cours,e the blood in there too ;(
poor chris...

So, its 11:30pm tonight and Chris calls my cell phone... he is telling me to call Dr Strair... he is practically begging me.. saying he needs to be able to sleep.. he is laying in poop (had an accident) and i hear his machines beeping.. I asked if he called the bell and he said yes...
I am so scared.. i feel so bad for him.. he is telling me he needs help
I ask him to hang in there.. tell him i love him... tell him we are almost there.. remind him i am proud of him and that he told me to go home... i dont feel guilty but i feel so naturally bad that i am not there..
he tells me he is trying .. he still wants me to call Strair...
I called the nurses from the other phone and Tracy tells me that the fellow, Dr Lee was in there 15 minutes ago and that they are getting a new drug from pharmacy to help him sleep...
she is going in now.. and she tells me they just had an emergency on the floor...
I really wish they would have 5 nurses at night instead of 4... it would help so much

I go back to Chris and he is telling me he cannot move... i am trying to ask him what part of his body and he isnt answering me.. he is just talking in general.. ativan makes you sleepy and out of it... so he is awake but not totally
I had him on the phone for 12 minutes and then i was saying (as I heard him telling tracey he was on the phone with me) "Jenn let me call you back"
Its been 45 minutes since we hung up so I am hoping he is sleeping and that is why he hasnt called...
poor guy...
I pray this diarrhea stops so he can feel better...
Graft vs Host is so scary
the new med says its also used to prevent rejection with kidney transplants
I want him to be better and go to rehab and focus on getting his strength back.. I feel so bad for Chris... getting rid of this diarhea will make him feel more normal and more like he is gonna get out soon....
Hearing from him tonight broke my heart... He seems to be with me.. he is telling me he is hanging in there.. but acknowledging that its very hard for him right now... he is still fighting but its so hard

please say a prayer for him...

Jeanie & Brian's friends lost their little boy (6 yrs old) today... he died suddenly and they need our prayers too... its a reminder that we dont have total control over our own lives and they wont get over this ever...
Since so many of you pray for us, for Chris, I ask you to remember his family today....

Love you all
Jenn