Re-Cap of the last week (including the complications beginning)

Ok... its been a busy week... and I havent blogged in a while... so I am going to try to make this as short as possible...

Wednesday Dec 17th - Chris was feeling ok except for very sore throat & throwing up everytime he drinks anything.. I think I came to see him during lunch... After work, me & mom went to Kohls to finish Christmas shopping.. then I came here to spend the night with him...
Thursday Dec 18th- I left from the hospital in the morning.. went home and got ready for work. Went to work holiday party at 2pm and had a few drinks (havent been drinking in a very very long time) so I shopped in the mall with a few co-workers for an hour and went home to shower & went back to the hospital
Friday Dec 19th- Chris is still having sore throat very bad... still not eating... I stayed over at the hospital.. icey roads... my brother was out for his birthday but I didnt join him cus i didnt want to drive...

Saturday Dec 19th my parents came to visit and I was at the hospital til the afternoon. Then I went home and to dinner with Christine Rapach for sushi.. yummo... then came back to the hospital to hang with Chris...

Sunday Dec 20th, Chris's counts were back up... his white count was good and was no longer neutropenic. Rose was Chris's nurse all weekend
Because his white count was up, he no longer needs us to wear a mask in the room.. but we still need the gown because he is c-diff positive... they try to prevent us from bringing it into the hallway...
Also, his sore throat is finally getting better because his counts are better. Sunday was only day 10 so it was kinda early for his counts to be up.. but not too early
Also, on Sunday, he was having trouble breathing - pulse ox was low... gave him oxygen...
Oh also, when I got there Sunday, Chris told me he was having trouble seeing... he sees a spot when he looks out of his left eye.. that was his stronger eye... his eyeglass prescription was because his right eye is lazy and weaker... so now he is upset.. but they dont send an optomologist today

Monday is when things started getting crazy...
Breathing was not better Monday... I saw him in the morning briefly.. and then I came at lunch. I get there and Nancy stops me to tell me he had gotten up on his own to go to the bathroom and he also accidentally pulled his triple lumen out of his neck (the port where the 3 tubes are)
ughhh.. She tells me to tell him not to get up on his own but i know there are only 2 reasons he would do that.. He does not want to disobey but he either gives up on waiting when he calls... or, in this case, he had so many drugs in him, that he didnt know what he was doing... Chris is stubborn but he knows he doesnt want to fall....

So I get in the room and Liz the nurse is in there and Chris is in the recliner, clearly not himself... he can barely explain to me how anything happened... My heart is breaking seeing this... I guess because he was so out of it and pulled his tubes out and took an uneasy walk to the bathroom, he got very upset and anxious so they gave him ativan and xanex...he was taking the oxygen off his nose and putting it on his head... he was super restless.. saying crazy crazy things.. I was crying.. i couldnt help it because he was trying to get up... almost yelling at me (somehow he knew my name when he was being told by me not to get up) and anyways.. they were talking about getting him one-on-one care while he was going thru this...
They told me they started him on steroids for the inflamed liver and lungs... also has fluid .. Dr Strair stops in to see him and Chris worships Dr Strair... would kiss the ground he walks on... and this is when I knew he had really lost it from the drugs... Chris was taking the oxygen off and putting it in his mouth... Dr Strair and I were telling him to put it in his nose and Chris said "I want to see what this cool toy can do" He would NEVER say that to Strair if he knew what he was saying.... I just felt so helpless...

So, I go back to work and finish up and then go to the hospital... well.. i stopped home to shower cus i wasnt sure what the night would entail
On my way home, Dr Biren (doc on duty this month)calls to update me...
they are concerned about breathing and they are having ICU evaluate him...

I get there and there are no beds in MICU so they are sending him to SICU... where they are mostly open heart surgery patients... ugh
My dad came with me because i know from last month that ICU doesnt like you to bring a lot of stuff with you.. my dad helps me pack up his clothes, decorations, laptop, etc... and he brought it all home for me.. while we were packing, Dr Park, the eye doctor comes... he told me there is bleeding in his eye from the leukemia... it just became symptomatic.. Doctor is pretty sure the bleeding has been there for a while... its either because of the leukemia or possibly leukemia in the eye... they dont treat it.. they treat the cause.. and thats what we are doing.. a transplant to fix the leukemia.. the hope is that as transplant kicks in and he gets better, the bleeding will resolve itself

poor guy just has no idea whats going on... Kristen the CCT was sitting with him for the last few hours and followed to SICU
We get him settled in SICU (I had to wait in the waiting area... thank goodness Will came down and saw me sitting waiting still.. he got me in faster)
Kristen told me his nurse was a tough one... she came in and told Chris he wasnt in bone marrow any more and better stop playing with his oxygen or she will have to tie him down... WOW... he is sooo claustrophobic... not cool
So Kristen and I talked for the next few hours until her shift was over and it was time for me to go home and leave SICU

Oh Dr Strair had mentioned that the dilaudid was staying in him for 8 hours or so because his liver isnt processing as fast as normal... thats why he is acting so weird.. on top of all the other drugs and the steroids apparently cause steroid psychosis... it is not recommended that he get dilaudid if he can avoid it...

Tuesday i call the SICU nurse and she tells me he is doing ok... breathing is not worse... and I went to see him at lunch... he had just had a bowel movement... He is so out of it... but better than the day before...
I went upstairs to talk to Dr Biren because the oncologists are not in SICU... and the SICU nurse had no clue what was going on with him.. they did an ultrasound of his body for clots.. they did an EEG.. and a catcan of head and the nurse had no indication of results or what was being said
So, Dr Biren sat down with me (luckily I found him) and explained to me that they were happy that they didnt have to intibate him... breathing didnt get worse... counts were going up... cells were engrafted... liver enzymes were going down a bit (getting better) and the concern was that he started with a large amount of diareaha that day..if it is acute graft vs host disease (GVHD) then the steroids would be the med to try and they started them monday... colonoscopy would be done next day, wednesday, to check...
So I go back to work.. I am freaking out because i am scared naturally... and I know that too much gvhd is not good... but a little is good and desired... gvhd is a good indicater that there is probably gvl (graft vs leukemia)
I asked Dr Biren about that and he said yes a lil is good.. but a lot is just a lot harder to control... treatable.. but complicated when there are multiple things (rejections, i guess) going on... He said this is when Dr Strair would be walking the "tightrope" balancing the anti-rejection med dosages and the meds and steroids and all that...
Well, Aunt Ro called Dr Strair and he basically explained that A) the transplant "worked" as far as engraftment.. the cells took.. thats good... but B) in addition to the lungs, the steroids should be taking care of his GI Tract... and should take care of it within 3 days... so its now a waiting game.. if the steroids dont work, it would be considered "steroid resistant graft vs host"
this whole process gets harder and harder even though in some ways its easier because i am used to so much of this crap...
I remember the constant diareaha he had last month from chemo and septic infection and I am a mess...
I get to the hospital Tuesday after work and the nurse is excited.. he is himself.. talking... hadnt had diareaha in 6 hours...lungs sound better.. woohoo.. May is his nurse.. very very sweet... liked her a lot... she was like a nurse coach... excited for him...
I stay til 7pm when ICU kicks you out for change of shift..
I run upstairs to see 4North nurses.. Nancy gives me a hug... I see Sharon the chaplin who is AWESOME... she had called me earlier to let me know she saw Chris.. but she is on vacation for a week starting Christmas :( but we text... its a great support i tell you...
ok, wait.. no.. I saw Sharon at lunch.. I saw Nancy at 7pm.. but whatever...
I ran upstairs to see the 5North Nurses... Mary ran over to see me.. Kachi gave me a hug.. Ade was asking about Chris.. they love him and i updated them all
Then Christine Rapach met me for dinner.. we went to Stuff Yer Face... yummoo... martini and stromboli.. doesnt get any better
I went back and Christine came with me to see Chris... he was a lil silly.. but pretty with it... still no bowel movement... lungs sound better.. and they are moving him to MICU-- Astrid is his nurse... he is so with it now that he remembers her from JFK ICU back in early June... he remembered her being prego and whatnot
Lauren is his nurse in MICU for the night.. she is nice... they still havent given Chris a pic line.. they are still using IV to give him all his meds.. i stay til 12midnight or so and go home

Christmas Eve Wednesday comes and I call the hospital MICU... nurse Andrew tells me still no bowel movement and lungs are better...
I get there at 2pm and he is talking to me.. all looks good... Dr Zho comes (the fellow) and says his lungs are getting better.. the liver counts are coming up.. the other counts are coming up... Oh, they did a sigmoidoscopy in the morning... Chris tells me it was terribly painful.. sorta like a colonoscopy but they blow you up inside a bit.. take a piece of intestines (I think) and they did it bedside..
my mom said she had one years ago and it was worse than labor...
I leave to go home when ICU kicks you out -- had dinner at home.. went back with mom and Chris is out cold... nurse tells me she gave him dilaudid.. ughhhhh... he can barely wake up.. isnt himself... mom was so bummed cus she heard him on the phone earlier how great he sounded... nurse wasnt aware that it made him so hallucinative and out of it...
I talked to the doctor and she took the order out of the computer.. he shouldnt have that unless he gets really bad pain.
his breathing looks great... only thing is that the nurse said he had a bowel movement at 730pm.. so after none for 36 hours, he had one..
I have no idea what that means in terms of the graft vs host and whether steroids are working.. if one bowel movement a day is ok.. if its bad...
However, as you recall, he had been throwing up every drink for weeks... he has been drinking water and gaterade for 3 days and not throwing up
We let Chris sleep..
I come back from speaking with doc, and Dr Dodzie sees me (the young hot black sexy doctor, as he called himself in the summer)... he is a resident and he was on in the ICU.. he gives me a hug and i turn around and see Tanya - one of our fave night nurses..... hugs all around.. she came to see chris.. i tell her about the dilaudid and she knows immediately what that does to him.. I fill Dodzie in on the last 6 weeks and they tell me what a fighter he is... blah blah blah..
Tanya meets my mom.. and then tells me she will be back friday and the whole weekend i think...
we leave and go home after 1130pm
I feel so bad at this point cus i am getting so many texts and calls.. havent updated the blog but i am so tired
I am so happy i am off til january 2nd

Christmas morning, i call the nurse before church and Andrew tells me they are moving him back to bone marrow.. he had one bowel movement in the morning..
lungs are better...
I exchange presents with parents and go to hospital
Then parents and brother come after 3 and are here for his transfer to the bone marrow unit...
He is so uncomfortable.. but the lungs are clear, but distressed..
however, they expect them to be distressed..
he threw up some liquid tonight but he is so congested all of a sudden and is saying its not nausia gagging its super dry mouth and (sorry for the TMI) but its boogers in his nasal passageways making him gag.. he is so thirsty
he can eat but isnt ready for more than boost yet.. maybe tomorrow

i am going home. its after 1030pm.. and i need rest.. he is sleeping and happy he doesnt have pain..
his biggest frustration is his eye and the dry mouth and congestion
I am hoping that although he is diareahing 1-2 times a day, that its not as bad as they were worried about.. overall, he seems better
the pulse ox actually stayed up at 93 without his oxygen on for 7 minutes or so.. he blew his nose.. i think it helped

thats all for now. oh. we got a very nice package from Aunt Ro in the mail with gifts and decorations.. did i mention that last week? Grandma peters and waxmonsky both sent cards and gifts.... he got cards from Jen & Lew, ROnnie & Gary and family and the Finkels plus cards from all my friends as normal.. Chris liked seeing pics of Ben and Liv and all the cousins and friends' babies...i feel like i am forgetting something or someone.. but when i remember i will update
love youall.. merry christmas
Jenn