Meltdown, More Diarrhea... Steroid-Resistant Graft Vs Host...Ugh

So... I had left Sunday night at like midnight... Chris was seeming to be sleeping and ok...

Monday I went to work and went to visit over my lunch break... Anne, the Nurse Practictioner who is only assigned to transplant patients, tells me he had a meltdown shortly after I left last night... I do not think it was related to me leaving... he was just tired of not being able to move.. tired of being super uncomfortable in the bed.. and wants to go home.. apparently he was telling Sophie he was going to sign himself out... Sounds like he was borderline nasty.. not sure exactly what that means... And he loves Sophie... So I know that its not Chris... well.. its not the normal Chris.. Anne also mentions that they are going to put him on an anti-depressant to help him and that Dr Strair saw him in the morning and wants to talk to me and him about where we are in this process... Anne also mentioned that they talked to him about rehab for his physical therapy as an in-between when he leaves here... and she noted that Chris seems against it... so we talk a bit and then I went into Chris's room

Nancy is his nurse! woohoo.... she said he had been pretty good for her.. she is training a new nurse, Karen... Anyways, Chris is out of it and Nancy tells me that Dr Strair put him back on Dilaudid!!! Because Chris said the morphine wasnt working for his knees....
ooooh boy... Nancy is also not happy about this...

I went back outside and talked to Anne... she wasnt aware that the dilaudid made him hallucinate and all that.. She said she thought it was the Ativan.... It kills me that there arent some major bullet points on the front of his chart... a ton of nurses know about his dilaudid reactions.. the fact that he talks nonsense and gets knocked out way to much and just does really bad things not even realizing it when he has dilaudid.. Liz the nurse was near her and I was like "hey, ask her.. she has seen is first hand...." anyways... I explained to her that I really felt like he was asking for pain meds when he wanted to sleep.. .not so much for the knee pain he says he is having...

Anne switched it back over to morphine... I mentioned Sharon and Anne said she had been there earlier but Chris was sleeping. Anne asked me if I could come at 730am to see Dr Strair the next morning... she went on to say "well you tell us a good time.." I thought, hmmm.. yea,,, I know Dr Strair has clinic appointments all day across the street... let me suggest noon or 6pm...lol... So of course, I agreed to being here at 730am... Getting up at 545am is fun when I am already not getting a lot of sleep.. what the hell right? lol.. sorry venting...

I talked to Chris while I was there for lunch... he talked a bit... Nancy pointed out that she felt the anti depressant was a great idea... She said he needs it.. seems he lost some of his fight.. I agree... this is not the same old chris these days... Cant blame him.. you trying being stuck in a room for a couple months, stuck in bed for that matter... and going to the bathroom in a bedpan... you'd lose your mind probably... anyways, he explained to me that he is depressed cus he is stuck in there and cannot get comfortable and that he wants to go home... so i sympathized and he was actually his old self when i had to go back to work... told me to "get out of here so you dont get in trouble at work" and gave me a kiss

Anyways, I grabbed Bengay for his knees at home after work and went to see him for the rest of the night. My brother also came for a couple hours after work.. bought him a new Spuds dog... or snoopy... a stuffed dog.. ;) He is still kinda down. Sharon had come to see him and talked a bit but he was groggy

Tuesday morning comes. I get to the hospital just in the knick of time... damn 27 in Highland Park was slow as shit... and then the hospital deck was full... what??? i drove around behind slow ass cars and finally got a spot... then i get upstairs to his room and he was just telling the nurses to call me cus i might be late or forgot.. ugh.. i was 5 minutes late... and i gave myself more time than i needed... and my own fiance is doubting my ability to get there :(

Dr Strair comes in and basically tells us that his graft vs host is steroid resistant... It hasnt slowed down... Now, Aunt Ro had mentioned to me that Strair said on December 22nd, that it would be considered that in 3 days if the diarreaha didnt resolve... but now its 10 days later or so... and because it seemed to be a little better or at-bay when the lungs were getting better, i assumed things were slowly getting better... i guess not... and its affecting his skin (another common GVHD area) his face is sometimes reddish.. neck is a little discolored.. :( i wondered why some patients walking the hall had that coloring.. now i understand..
Strair basically said that this is "difficult". He told Chris that they will be giving another dose of Remicade (spelling?) on Friday. he got it once this past Friday.. a pretty harsh drug... and its only once a week. Anne did mention Monday that it often times takes 2-3 doses... Strair told Chris that they all empathize and that no one knows exactly what they are bargaining for... and that some people lose their will to live.... Chris said he has not.. he said he wants to fight..
Strair told him he has to get moving to get his strength back.. He said that this GVHD is rough and that it has him bed-bound and that he has to try to get out... and that it might help

(sidenote: this frustrates me to no end because he was in a chair on Thursday.. took a few steps... or was that Wednesday? all i know is Physical therapy didnt come on the holiday thursday.. i think they came friday and just did leg exercises... and they didnt come this weekend... i am sorry, but someone should be able to somewhat force him to move around.... his stubborness is from the drugs and his illness.. not because he doesnt want to get better.. and I tried.. i asked about PT on the weekend cus they were here on saturday for other patients.. but i got nowhere)

So, Strair went on to say that this is as difficult as before the transplant.. I assume he means to treat... and to deal with... I am not sure what the chances are that his GVHD wont get better or what else could happen (get worse) and I really dont want to know details of that right now cus this is hard to handle...
Strair mentioned that if it doesnt get better in the next 24-48 hours that they will add another drug to try to resolve it.. but that every med in this situation has its own side effects :(
He said these drugs can be like chemo (making you tired and want to sleep, etc)

Chris was not expecting this.. BUT i think what Strair said helped.... he seemed a lil more motivated to fight and when i had to go to work, he was sweet and i left...

I went home after work cus there was a chance of bad icey whether and i didnt want to face icey roads at 10pm or later when it would be time to go home. And i Have to be at rutgers wednesday (today) so i slept at hospital

Anyways, last night, Tuesday, Jen was his nurse... they were short staffed (down by 1 nurse, which is a pretty big deal in this unit)
Chris's diarreaha was a lil worse this night... and he was getting really frustrated because when he would wake up and realize he had an accident, he would call and it would take them a while... maybe not forever for most people, but he doesnt want to lay in his "stuff" and because i was there, i could see thru the window that there were nurses sitting there... its hard to be here and see that but its also annoying to think how it would be if i werent there...
plus everytime they cleaned him or helped him reposition, they often forgot to give him his call bell so i would get woken up by him talking to himself and i would get up to get his call bell.. i dont care... but what if i wasnt there?
One time, i woke up cus he thru a bottle of water at the door... he didnt have his call bell... How did the nurses not hear it? then he called when i gave him the bell and he said his machines were beeping (when he really needed to be cleaned) i guess he was a lil out of it... but i watched the nurse come to the door to hear that there was no beeping and she walked away
CAN YOU PLEASE COME IN AND CHECK ON HIM???? THEY KNOW HE IS OUT OF IT....
So i get up, again, and tell them... and they looked sympathetically at me.... so they came back in and helped him
Oh, and everytime they came in, they turned the bright lights on... there are dimmer lights..
Chris kept complaining about it to me... i dont know if i can request they not do that? but what if the nurse has bad eyes? i dont know

anyways, its not wednesday.. i have to go to rutgers for the job fair.. and Chris is with Jen and Karen the trainee today (she is an experienced nurse, just not on this floor)

I am praying Chris's diarrhea gets better...

Oh, duh... yesterday he got a good workout,,, and got in the chair... and he was in great spirits last night.. wanted hugs.. talkin.. so it was nice.. he said he saw sharon and it helped...

Now, its wednesday, like i said.. karen and jen are with him today and its good cus karen is a trainee so she is extra hands...

Talk to you all later
prayers please
xoxo jenn