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

A Week of Updates- Happy New Year

I guess in being off from work for a week, I somehow managed to take a week off from blogging...
ooops

Sunday, December 28: Chris was feeling better. His dad and brothers Tommy, Danny, and Brian came. Chris hadnt seen Brian in over 10 years- Brian was only 6 yrs old or so back then... Brian was only a baby when Chris's mom left her family. This was the first time I met Brian...
Chris has been pretty sleepy and quiet.. but he was really excited to see his dad and brothers again. they brought a clifton newspaper, more pictures, cheesecake, etc... They really cheered him up even though he might look a little non-responsive... His dad was funny, asking how the bone marrow tasted... and other funny things that made Chris crack a smile...
I went home to have dinner with some relatives and whatnot..
My depression moment of the day was watching my Cowboys lose to the Eagles -- of all teams.. the Eagles... AND because Tampa Bay lost, the Eagles got the wild card spot... ugh... sadness in the land of Jennifer...
Later on Sunday, Jeanie came to visit Chris and me... we chatted with Chris.. watched Chris rest... and eventually we left.. she drove me home so that I could leave my car at the hospital..

Monday my dad drove me back to the hospital.. I got a bunch of cleaning done at home during the week... Being that I havent been home much in 2 months, the laundry doesnt get put away.. luckily my mom washes out clothes but i have to sanitize the house before Chris gets home.. which is in the near future depending on the diareaha and walking status...
I wish cleaning services (maids) were cheaper because with Chris's immune system being suppressed, i am supposed to shampoo all carpets and rugs before he gets home and keep the bathroom and bedroom super clean and cloroxed... When we took the bone marrow class a couple months ago, i left the room very overwhelmed because of all the things they tell us to do and clean.. my parents' house is clean.. but with 5 adults in the house and all of us working, the thought of vacuuming everyday, bleeching the inside of the fridge every week, etc etc...and all that is just a lot... they suggest changing the sheets on the bed multiple times a week.. not letting Rex sleep in his bed... they even suggested de-clawing Rex but we are not doing that... (Chris didnt do it when he was a kitten and its a pretty cruel thing to do to him now that he isnt a baby especially) so we have to get his nails clipped atleast every 4 weeks... chris is discouraged from eating in restaurants for a few months atleast and therefore will be eating at home everyday.. which is fine but if mom isnt making something chris feels like eating, i will have to start cooking again too...i love to cook and i do.. but its just another adjustment post-transplant...

ok, back to the week...
basically over the last week (Monday through Friday) Chris has been doing good overall
He is breathing on his own and everyday the pulse oxygen number went up a bit. By this weekend, it was up to 99%.. which is great... I keep telling him to use his incentive spirometer because he should still exercise his lungs.. lately, he has actually been listening to me and using it..
they have added opium and anti-diareaha meds to his orders... all week he was having about 2 bowel movements a day. By Thursday, it seemed that it started to get a lil consistancy.. but by this weekend, he started going 3 times a day. i think today he actually had 4 (but the last one was very small) As of last evening he stopped eating. The doctor changed him over to NPO today (nothing by mouth) because they feel that maybe he should rest his stomach so that the meds can work without the stomach also trying to deal with food... so hopefully that works
in his words, he is "tired of crapping"
He is on 100mg of steroids a day to control the graft vs host. And, the steroids make his sugar go up, so we have the insulin for coverage too...
Physical Therapy came on Monday Tuesday and Wednesday. They didnt feel he was ready for walking yet, but did lots of exercises in bed and then in the chair..
Of course on Thursday physical therapy was off for the holiday but the good news was that we got Dr Strair back. He is on for the month of January.
We were lucky to have Dr Biren S (cant spell the last name) for December but Dr Strair has known him since Day 1 and just love him more than anyone else...
Ok, lets back up a bit...
Dr Park, the eye doctor had been checking on Chris here and there.. told him to see him when he gets discharged for a follow-up-- kept telling Chris that the blood clot in his eye is the same and wont get better until his treatment for the leukemia (the transplant) really finishes doing its thing...
Well, Chris wasnt that comfortable with all of that, so the normal eye doctor for the unit had been on vacation and came back this week.. Dr Anderson who practices in North Brunswick.. she looked like she came straight from the gym.. but we liked her a lot... Chris loved her actually
She explained things a lot better to Chris... basically when the counts are all messed up (low) during chemo and bone marrow transplant etc... bleeding can happen anywhere...just like there was a tiny bit of bleeding in his head a couple months ago (when they did a scan cus of his siezures) anyways... there was some bleeding in his eyes and it takes a while for it to disolve... in the eye, there is a gel and the clot is sitting in it.. unfortunately right in his line of vision...
Doctor said that he should stay inclined or upright because gravity will help the clot fall below his line of vision... otherwise she said regardless it will take 4-6 weeks to disolve.. and thats its pretty common in patients like him.. so we will be seeing her for a follow up..
I think she might even he in Dr Partridge's office complex (the plastic surgeon who did his finger tumor and leg biopsy).. Oh Dr Anderson also mentioned that she and Strair go way back.. apparently Strair's daughter had a crush on her son back in kindergarten or something.. hehehe.. she mentioned Dr Strair's wife is also a doctor. I knew Dr Strair had a daughter but i never was sure if he was married... atleast she understands why he isnt home a lot since she is also a doctor.. but yea... thats that...

Also, on New Years Eve (Wednesday) I went to see Chris and brought wine glasses. He promised me that he would be awake for the ball drop
Side Note: Chris has been very sleepy ... mostly understandable for anyone who goes thru chemo and transplant.. I read that most transplant patients dont get there energy levels back to normal for 6-12 months after the transplant . or more...
Plus the diareaha and lack of moving around and drugs.. he is naturally going to be sleepy
However, they are allowing him morphine for the pain in his knees...
His knees have been hurting him for a week now... Dr Strair examined him well and I wasnt there for that, but Chris told me Dr Strair feels that its not graft vs host or anything.. I naturally get nervous because of where his leukemia was originally.. but there arent bumps or anything.. AND he has pre-existing knee issues.. had surgery on one knee years ago.. he has those kind of joints that bother him with the change of whether... so I guess between the lack of movement and the pre-existing thing, they are bothering him.. but it stinks cus otherwise he wouldnt need pain meds... luckily its not dilaudid anymore... but the morphine makes him even more sleepy.. and that doesnt allow for him to move around.. its a tough balance...
I hear other patients (from hearing nurses talk and whatnot) getting pain meds (for various things i guess) but i know Chris is also pretty anxious.. possibly a little depressed...

I cannot imagine how he feels.. he has been in the hospital for a very long time... since October 20-ish, he has been here except for about 10 days in between). I cannot imagine being in a room (not hooked to IVs) for 1 day.. so 60 days+ plus has to suck... i dont blame him.. but he has been such a fighter and i notice he is having trouble staying awake or himself lately...
He says he wants to go home.. and I keep telling him that he cant until he is walking (which is true) but they say when his diareaha is better and he is ready to be discharged, they will send him to rehab if he isnt walking well enough... he says he wont go.. oh boy! So, I am hoping that he gets more motivated

As of today (Sunday) he knows Physical Therapy will be back for the whole full week and he says tomorrow is D DAY.. he swears he is going to work on this now.. so I am hoping... I dont want to even think about him coming home and not being able to get up the stairs again.. ahh

So, its 10:20pm and Chris hasnt gone to the bathroom (#2) in 7 hours... I am hoping and praying (as I am sure, so is he) that its gonna slow down now...
They also were telling him to drink prior to today so he doesnt get dehydrated but now that are telling him nothing by mouth except with drugs and maybe ice chips.. so thats another battle when he is better.. to make sure he drinks enough.. I read that dehydration is common for these patients and could be bad, obviously... so hopefully his stubbornness goes away when he is feeling better

Anyways, back to THursday, Dr Strair came in to do rounds in the morning.. we hadnt seem him in a while (since the day Chris was going to ICU and was acting really silly)... So Dr Strair walks in and says "So I hear you are on the up-swing" Wow, isnt that nice to hear from him.... Even though he doesnt do rounds every day like the other docs on duty, doesnt mean he doesnt hear about Chris every day. Strair is very active in his care and medicine decisions.. so he has heard about all of his progress, and issues and whatnot...
Anyways, Dr Strair turned around to look at me when he asked me if I had any questions and i noticed him looking at my shirt... When he was done answering my question, he asked me if I went to Loyola University Chicago (I was wearing that shirt) and I said Yes. He replied that his wife did her undergraduate there - and he asked if I was from there. He went on to say that i got a tough good Jesuit education. What a small world.. There are alumni all over the world but not a ton in NJ... Being that I am a loyal Loyola alum and a lover of Jesuit education, I am excited.. lol.. anyways.. enough about that...

Lets see.. my parents came to hang out with us for a few hours on New Years Eve... Chris had some rice pudding.. was eating a bit during the week.. and keeping it down.. but was battling some nausia... i guess he wont be eating again for a lil while but thats ok if it helps settle the GVHD in the belly

I slept at the hospital on New Years Eve and I also slept here on Friday night --
Dr Strair was off for the weekend and Dr Gharebo (totally spelling that wrong) - He had her in August. She is nice... and covered this weekend

Back to Strair tomorrow

I also learned more about the young 20 year old guy on the floor. He got discharged today. His mom ran into me in the lounge and she told me that he was next door at the Childrens Hospital prior to coming here (which i knew) She seemed to know that Chris and I were married (well, close- lol) but she sees me everyday.. so its a no brainer i guess... She said that he was in the hospital for about a year... 8 months of chemo treatments I guess.. I mentioned Chris was in ICU for a while and then dealing with GVHD now. she told me he had that too.. and that his diareaha was still hanging around, or it was soft i should say... but its nice to see people are dealing with the same as Chris (nice,as in normal, nice not as in pleasant)..
But the stunning part was that she told me he was home only about 2 months.. he relapsed and came back... they were able to do the transplant (I didnt find out why it was not done before.. maybe it was gonna be avoided if chemo worked.. or donor wasnt found.. dont know) but she said he was in ICU 6 or 7 times (I guess over at childrens hospital) and she said that because he was now 20 that he was able to have transplant here.. otherwise as a pediatric, you have to go to phily because they dont do pediatric transplants here... so that was a relief for them.. they live in freehold.. anyways, he had MENINGITIS at one point and almost died... can you imagine? thats quite an ICU complication.. thats why i hated when they sent Chris down there.. luckily all he ever caught was VRE... anyways.. i am sure i will be running into them across the street for follow-ups

We had Liz as a nurse a few days this week.. Valsa once... Tatiana yesterday and today.. Liz is my buddy cus she doesnt want to give him morphine.. she was the nurse who sat with him for a bit on the day he pulled out his triple lumen port. She saw him at his worst...
Valsa loves Chris so much "that she will do anything for him" lol.. love that.. but Chris doesnt know when he asked for his 6 mg of morphine she only gave him 4.... but he didnt know and it worked.... Tatiana is from Russia.. she is so sweet and takes good care of him...
I would LOVE to know why Chris hasnt had Nancy though... she was here a few times during the week and didnt get Chris... Luckily, Chris hasnt gotten the nurse he doesnt like... and hopefully will be home soon... But I almost feel like Chris isnt getting Nancy cus i asked for her... i dont know ... luckily except for not getting her, he has lucked out...
At night, Chris had Sophie and Nina this week... love them both...
Caroll asked about Chris today.. loved the Christmas card... she had a Danish Christmas (they put real candles on their real Christmas tree) its their tradition.. whole family comes.. do it every year.. firefighters' nightmare.. but she is nice..
Tanya has been off for a week! but i think she comes back tomorrow... even though Chris doesnt get her at all lately, i have someone to chat with when its a quiet night and I am here... I feel like a crazy woman... Chris is right outside the nurses station and i can see the board where they put nurse assignments so I watch as they assign and cheer (quietly) for certain nurses.. i know.. its sick.. but chris sleeps a lot.. i have nothing else to do!!
All the nurses have their tactics... Nina just comes over and inclines him and tells him to take his pills... it works.. he likes her too.. but other nurses just leave the pills and he wont take him unless you catch him when he is awake...
Sophie is a sweetie and like a mom.. so her motherly ways work with Chris too... just when you think he is sleeping he is listening and tells me about stuff...

Tomorrow Tatiana is not working so I wonder who he will have..lol... I probably wont get here by 7am tomorrow so i wont get to watch the board in the morning.. haha

Yesterday, Saturday, Jeanie and Liv came over to exchange Christmas gifts.. That was fun. hadnt seen Liv in a while... she melts my heart and wanted me to find Rex (cus he was hiding a lot when they were over)

For all of you who have called Chris in the last 2 weeks.. please do not feel offended that he hasnt picked up or called back.. he doesnt call me either...
I was shocked when I got a call a couple days ago when i was home.. and my cell died over night last night (which happens once every 6 months to me!) So, of course he called me at 5am and 7am and my phone was off.. awww... but its ok.. i reached him finally around noon before i went back to the hospital.. it took many calls for him to answer...

I know a lot of you have noticed his mailbox is full.. so tomorrow i am going to attempt to get him awake enough to dial in and listen to messages...

Some of you contacted me via cell, text, email, etc to ask whats been going on... so i know it was time to update the blog too... Ronnie, Aunt Ro, Gina, Ann Marie, etc etc i owe a lot of people calls and emails..

for those of you who read... Christine Rabbath brought me a great novel for Christmas and i stopped reading my Jane Green novel to start it.. i am addicted and halfway through in just 2 days... Its called LOST AND FOUND by Carolyn Parkhurst.. i totally recommend and thank christine for that one!

Sad the Eagles won today.. boo... Sad I go back to work tomorrow... but its ok.. once Chris is home i will have 7 or so 2008 vacation days to use in January that my boss was kind enough to let me carry over so I can take care of Chris and take him to appointments and stuff...

Chris's blood counts all look good.. where they are supposed to be... His blood pressure has been good.. sometimes low but ok.. low from morphine and lack of activity...
Chris perked up a little while ago when the new Dancing Show on NBC started... he heard it was coming up after the football game and actually knew of it and wanted to watch... so he stayed awake for over an hour.. he is sleeping now. Sophie gave him morphine but said he hadnt gotten it since 3pm... he is allowed to have it every 2 hours.. ugh.. so its good that he went 7 hours...

Chris told me the other day when I suggested he call his brother Lew back "I dont like the phone.. thats your job right now..." so i gave up.. i had been asking him to try to call me during the day atleast once when he is awake just to tell me he is ok... but thats the response i got...
So, Lew... I will call you soon.. or you can call me... but apparently he doesnt want to talk on the phone.. i know he mentioned that his arm hurts from holding it.. plus he cant see too clearly cus of his eye blood clot so its hard for him to see the right numbers and contacts to dial... i dont blame him... but hopefully when he gets more active with physical therapy this week, i hope he gets more motivated and happy

He also told me this week that he doesnt feel like himself... i can imagine why he feels that way.. but it seems to be bothering him.. i try to cheer him up and it works sometimes but i think he has fallen into a slump.. he is so ready to go home and done being in here... misses his bed and Rex and home and normalcy... i know it doesnt seem like he enjoys company now because he is so sleepy but i know when he feels better its going to help him recover... so i am hoping he gets moving soon

I am leaving the hospital soon.. he is sleeping anyways.. and i need to rest for work tomorrow.. plus i want to read a bit before bed...
I want to try to get here in the morning before work.. but regardless i will spend my lunch break here tomorrow.. i have to find time during the week to organize his mail and bills and also clean my bedroom floor and clean various parts of the house.. i feel like i just did it.. but it was last week and i need to be semi ready for his homecoming so that its not a total cleaning frenzy when they do discharge him

Oh, earlier this week, we got a package from Aunt Ro's coworkers.. they sent us Orieles tee shirts, Ravens hats, MLB and Army throws and Redskins and Ravens towels and a nice card... how sweet.. a care package... So, I am sorta rooting for the Ravens now..lol.. happy they beat the dolphins... i dont like the Steelers ... as for NFC, i am gonna root for the Giants.. i know.. i am cowboys fan.. but i like the giants.. so i will suck it up for a 2nd year... cardinals i suppose would be my backup nfc team.. i cant watch the superbowl and not have a team to root for... so we will see...

i think thats all i have to say right now...
this blog was supposed to be for me and Chris to write the events and stories.. but since I didnt start it til October .. Chris hasnt had any energy to write and likes that i am doing it.. but i am hoping he writes when he is better, about his recovery... nonetheless.. i cannot believe how much blogging has accumulated already... I suppose this will be a nice diary for us to look back at .. maybe i really should start writing a novel like i always said i wanted to... stay tuned for that one..

love ya all... xoxox
Jenn

photos from the last few weeks (of Chris's room)

Aunt Ro sent the firetruck and singing reindeer (or moose)

bulletin board in his room

Aunt Ro sent the Angel Snowmen decoration and you can also see cards he received...

view outside his hospital window when it snowed
Chaplain Sharon ran the Philly marathon and had our names on the back of her bib.. Chris wanted a photo of her from the race.. and she surprised him with one framed that she wrote on for him...

Chris when he was in ICU with the oxygen

Finkel Visit, Steroids Decreased, Oxygen Gone, Anxiety Arrives

Friday morning... Christmas is over :(
I slept like a rock... i woke up Friday and felt like I needed another 10 hours of sleep...
I went to get lunch with my dad-- then I was getting ready to leave and Chris called me!! I havent gotten a call from him in over a week.. he has been too out of it use his phone... He told me he ate breakfast (not just a boost) and he ordered lunch... however he told me he ordered chicken parm!! oooh boy
So I went to see Chris-- Vivian is his nurse... she took care of him back in June... and was super pregnant then... She had twins and is back now :) She is an awesome nurse... his lungs are getting better.. but they are distressed from all the fluid and inflamation he had for a week... slowly but surely they will heal... he really needs to use his spirometer that he hates... He wants to get out of bed but isnt allowed yet because of the weakness in his body... and breathing was so distressed... physical therapy needs to come and assess him before he is allowed to get into a chair.. annoying... he is tired of being on his butt.. and sitting up in a chair would be great for the lungs... He wants to sleep through his discomfort.. He is not happy that he cannot have dilaudid...
Vivian had talked to him about ambien for the night, to help sleep.. and I reminded him that he had Xanex on order... they gave it to him monday when he had a restless day before getting transferred to ICU
Anyways, his food comes.. he eats some chicken parm and Coke.. and he threw it up.. He realized it wasnt a good food choice.. his belly hasnt eaten in 3 weeks.. its not ready for sauce... so he ate pretzels and that was much better... Boost too
Doctors said he had ativan on order for sleep, as well as Benedryl and Xanex.. the anti-nausia meds also help with sleep
Christine Rabbath came to visit.. she brought cookies for Chris and Christmas gifts... Chris loved it... Devils shirt .. he was pretty sleepy but big grin appeared when he saw the Devils shirt.. and Starbucks ornament ;) I got a matching one from them... yay! After visiting with Chris, Mike picked Christine and I up... he was driving Ben around for a nap while Christine was up visiting Chris...
They took me out to dinner... Ben is so adorable... awwww
Sophie came on for the night shift... Love her too.. she is so sweet
She takes really great care of Chris....
Anyways, Chris just wanted to sleep.. got his Ativan... and I hung out for a bit... was gonna leave soon
Then, I went out in the hall and saw Dr Sadov... Chris loves him... he wanted to come in and see Chris.... so I talked to him about Chris's progress and he said Chris was doing much better than earlier in the week. He said he was scared on Monday ... but Chris was doing so much better now
We go into the room, and Chris was in serious pain.. he had an IV in his arm (in addition to the pic line) and it was super painful all of a sudden...
Dr Sadov talked to him.. Chris said he wanted to rip the arm off.... so Sophie came in and Dr Sadov went outside to order some pain meds...
In the meantime, Will came in to help Sophie (Will is a tech) and Dr Sadov walks in saying "I ordered some Dilaudid prn for him for the pain" sophie, will, and I all turned and looked at the doc like he was crazy... Poor Dr Sadov had no idea that dilaudid was taken off the orders because it made Chris hallucinate...
So then he understood while we all looked at him like that.
He remembered that morphine didnt work for Chris but that was when he had painful sore throat... so he ordered that
I went back in the room, Sophie had already taken the IV out and it was a little better
Then we gave him a hot compress... Chris fell asleep.. didnt even need pain meds
I said goodnight and went home

Saturday morning, I woke up and cleaned up a bit at home... eventually got myself together and went to see Chris..
I get there and Vivian tells me he is medically doing fine.. but emotionally rough day... he wants to go home :(
So I went in and Chris told me he wants to go home... I gave him a pep talk... yadi yadi.. reminded him of why he is there and that he is getting close to going home
He said his eye and not being able to see well is killing him.. I feel so bad for him
that must suck
He is saying he can get his meds home and recover there ;(
we talk and he is better... he was even throwing some things around today...
His oxygen is gone!! no more tube in his nose... he is breathing much better
He ate some food and stuff today
Diareaha is less today so far... steroids are still decreased...
Vivian is awesome.. she was encouraging him and I love her
he is in his beer hawaiian shirt that Dana and Chris Cullen gave him... he looks so much more like himself
He seems better
My parents came to visit... they are so happy to see how much better he looks
Then i went to dinner with them and they dropped me back off
I will be here for a while tonight.. but he is sleeping.. so thats good
Physical Therapy came today and they said they will work with him more on Monday...
I talked to a guy in the hallway.. his wife had a transplant and she went home on Day 10.... 12 Days later she was back in the hospital.. thats when her graft vs host came on.. and she has been here for 2 weeks
Chris is at Day 16... Tomorrow is Day 17... he engrafted fast.. and his GVHD came quick
Hopefully he continues to improve and gets his physical therapy going on Monday... he wants to get in a chair so bad.. and he wants his eyes to work :(
Tomorrow Chris's dad and brothers are coming down to visit... so that will be very nice... that makes Chris happy... and then Jeanie is coming at night to hang...
Thanks cousin Jen for the Christmas card...
talk to you all later
xoxox Jenn

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