Back in ICU... Quick Update

Well...

This morning I woke up at 630am to 3 missed calls from Bone Marrow Nurses Desk

I called back right away and Sophie had been calling to let me know they were moving him down to ICU

Apparently his blood pressure was a little low overnight and although she had him stable, and his fever had broken, I guess the ICU docs felt it was best to move him

Sophie was saying she hoped the oncologists (Strair or Aisner)would come in before they moved him.. but i called Dr Strair and left a message explaining what was going on...

They told me they packed up his stuff and were holding his cell and computer til i got there.. that was nice.. i usually have to pack him up and move it all and then wait an hour while they get him settled in ICU

Anyways, my dad followed me to the hospital and took his stuff home... I went to ICU and saw Chris... His nurse Sara was wonderful.. very compassionate and explained a lot to me.. very friendly.. Chris slept most of the time..

The infectious disease doctors are on board, as are the intensivists (pulmonary), surgeons again in case, and others...
Basically, they want to closely monitor him

apparently, yesterday, they only took blood from his picc line.. not from a vein.. they always take from both
No one told me yesterday that they couldnt get a vein...
So, they havent officially ruled out the possibility that his picc line is infected.. but because his bellyrubin is high (indicates gall bladder, or liver area) and because he has increased belly cramps and tenderness... the doctors are thinking his infection came from the gall bladder
As we know, the GI Tract is a common place that gets attacked with all his treatments... and he has the GVHD there... but also they said sludge could accumulate there and cause some blockage or inflammation..
They are doing an ultrasound ... as of 7pm tonight they had not yet.. so probably in the morning (monday morning feb 2nd). They will see if the gall bladder looks very inflammed or not
They are also attempting to get blood from a vein (i told Sara to try the hands because thats where they usually get it)
They have taken more blood from the picc...
His fever all day today was 96 to 98 so that is good... antibiotics might be working
Chris had no poop all day.. so when i left tonight at 7-ish, it had been almost 24 hours
Not sure if i should get excited because i dont know if a gall bladder infection would stop poop... i think since the stomach is connected to the intestines and whatnot that he would still poop if he has inflammation in the bowels.. but i am not a doctor, obviously... just trying to see some bright side...

anyways, his blood pressure was good all day.. they have him on dopamine.. but its still good that they had him stablized ...

So, there went our little bone marrow unit, 4th floor, JennChris party for the superbowl... postponed! :(
I am happy he was not on ativan.. but he slept... but if all that is going on in his belly, his body needs to rest...

I decided to leave .. actually i think i left at 630... i watched Faith hill and jennifer Hudson and left shortly after. they kick you out of ICU at 7pm for an hour (shift change) and figured since he was sleeping, and i wanted to get rest and watch the game, that i would just go home.. I will stop there in the morning before work

I asked Dr Hart (Infectious Disease doctor who i have known since june whenever chris had infections) about what they would do and he doesnt think surgery would be an option now... and the xray shows no punctures or holes... so they could put a tube to gallbladder to drain the crap out that is infected..
But who knows yet... it could be just meds.. or something else
Chris would open his eyes and smile when i talked and answer when i asked him stuff.. but he wants to sleep.. he is pretty miserable but smiled and agreed when i told him to hang in there...
He said something about still fighting "for us" - poor guy has been through hell.. and back... and back to hell...
Its amazing how fast this happened... He asked me on friday night to bring his laptop on saturday and when i got there satutrday he already had a 102.3 fever

Dr Hart talked to me about what i already figured, but i wanted clarification... he provides the antibiotics orders and management and he hopes to be given as best an immune system as possible.. but with his kind of GVHD, the oncologists do not want to stop the immunosuppresents so we just hope that the meds work with his suppresed immune system
He got platelets and red blood today. His white cell count was a little higher than yesterday.. it was 2.9... 4-10 is normal. Under 2 is neutropenic..

Dr Aisner is on for February.. I asked him that today... so atleast there will be someone there i like for a while.. i was worried about who february might be
When i got to ICU today, i ran into a resident i know from november or october and she is in ICU now... she is so sweet and chats whenever i see her.. i think she liked me and chris... makes me feel more comfy when i can talk to doctors i have gotten to know

i am not happy that the steelers won.. but i am more sad that chris missed yet another "holiday" - it was a good game though

Well, its Feb 1st.. 2 full months since he was admitted for transplant...
He has been in the hospital for about 95 of the last 104 days or so
I never imagined he would still be in the hospital or going back to ICU this far into transplant... But I trust God will get us thru this additional ICU trip & infection...
Please keep him in your prayers

i will update more tomorrow
xoxox Jenn

Saturday Update

Well....
I got to the hospital today ... I only went for an hour because I had Sean's 1st Birthday party from 12 to 4...
Last night, Chris had mentioned he wanted me to bring his laptop.. SO I did

Anyways, my parents were picking me up from the hospital on the way to the party...

I walk into Chris's room and he has a new nurse Lois...
She looked familiar... turns out she works across the street at the cancer institute... i think she came into the bone marrow class we went to in October.. she said yes...
Turns out she was a wonderful nurse to have because she worked here in the past and works per diem now once in a while... she knows so much so i actually got answers ...

Here is the point of the day.. when I walked in at 10:15.... chris had oxygen on his nose.. :( he had a fever 102.3 awwwww
The did blood cultures and took a chest x-ray. She had already cleaned him up 3 times.. but small amounts...
He was waiting for them to come get him and take him to xray his belly.. Just to check for progress or to make sure.. no emergency.. but want to make sure since he has the fever...
She had just given him ativan and morphine... he was out of it... talking silly... once in a while he made sense but it was so garbled
I was texting jeanie and he was telling me not to worry about it.. lol he didnt even realize it was not his phone... and then i told him to get better cus i missed him at home (i was crying a little and didnt want him to think i was too worried about his fever) and he said "we are gonna be fine..."
Then i cant remember exactly what i said about getting better but he replied "oh i know its gonna be a girl".. i asked what? and he said "our baby" awww it broke my heart.. but i wonder what he was thinking about.. our future? babies? and the poor guy is so miserable and sick... too bad its gonna cost $25000+ for fertility to use his stored "boys" and attempt getting pregnant...

Anyways.. i went to the party.. and i am so worried about him...

Funny thing is... a few days ago chris said something like "i wish they would just find something wrong.. but nothing that bad.. that maybe will make it easier to fix what is wrong... fix the diarrhea"
He is on so many immunosuppresents making it easy to catch bacteria.. but drugs that could maybe be causing some diarrhea... he definitely has Graft Vs Host BUT it could be slightly better (seemed to be getting better last weekend) and now its back to same old frequency.. could it be the pentastatin? i am not a doc but this is all so overwhelming..
anyways...
I went back after Sean's party... and his xray was over... temp was down to 100.3 or so
He had thrown up a couple times... he hadnt thrown up in a month... so it must be from whatever is going on in his body

Tonight, Sophie is back.. wooohooo
He spiked back to 102.6.. they gave him more tylennol and then some other med to bring down temp... Blood pressure is good.. the ativan is still not totally worn off... but he was telling me i needed to be his angel when he was shaking and really hot.. i gave him ice chips and he is sleeping nicely now.. i think

The blood cultures came back positive.. so he definitely has an infection.. they havent isolated which one yet though..
Xray wasnt completely read but if it was something bad it woulda been known by now...

Tomorrow is superbowl.. i hope he is more talkative tomorrow and i hope he has a better day..
I keep praying. .I feel so bad for him
Jolenta from the 5th floor stopped down this evening and we chatted... she told me how much she admired me for being around all the time..
She said she has seen countless people file for divorce after their wife was diagnosed... or cheat in their final days of hospice. .i was shocked.. thats why you get married for the right reasons.. how can anyone do that? thats awful... ugh...

anyways... so i will leave soon for home...so he can rest.. and hopefully tomorrow have a better day...
Prayers tonight.. as always

Hopefully the antibiotics that they started today will kick in and things wont be too tough tomorrow

Sophie told me tonight that the steroids he gets mask a fever often.. soooo he could have had something brewing for a few days and never spiked...
MAYBE.. my little prayer.. is that that is why he has not continued getting better after his diareaha seemed better last weekend... i am praying....
so...

love you all
enjoy the superbowl tomorrow
say a little prayer for my Chris...
xoxoxo Jenn

Tuesday Jan 20th thru Fri Jan 30th

Tuesday morning I went to see Chris before work. He was sleepy and Liz was his nurse! yay! I mentioned that he should stay awake and watch the inauguration. I had little hope that he would...
I went to work... and watched 30 minutes of the inauguration from someone's office.
Then I went to see Chris. He was super happy and awake
He said it was a positive day! Turns out Liz spend a lot of the day in Chris's room and they watched inauguration coverage. Chris was pumped up and happy
Padma was his nurse at night. Hadnt had her in a while... Chris was happy...
I found out that they started pentastatin today. Its for 3 days.. So, he got it Tues, Wed, and Thurs evening. I ran into Dr Sedov when I got to the hospital and he filled me in. Its an immunosuppresent. Might bring his blood counts down. It is further suppressing his immune system to try to control the Graft Vs Host Disease (GVHD) - they dont want to wait any longer to try a new drug. His diarrhea wasnt slowing down. It can take 4-7 days for it to start working.
I cannot remember whether I gave him a ride in the wheelchair today.. I do not think I did .. but its been almost a week since i blogged...
I know Chris called his brother Lew tonight. Lew was getting married the next day, and he had tried to call Lew over the weekend, or a few days prior, and Lew told me he wasnt home... so Chris wanted to call Lew before he got married. They talked for a little while and that was that...
We chatted and watched some of the inaugural ball coverage. Chris was in a good mood.. and was falling asleep naturally from his day...
Oh, the psychiatrists were in during the day... They suggested Ativan (hahaha.. like he never had that before) and ambien for sleep... so they were gonna give that too him at night if he needs it...Padma is his nurse tonight... she takes good care of Chris and he likes her too...
He got sleepy and I went home to finish watching Obama and Michelle dancing

Wednesday Jan 21st... Chris had another good day...
I am blogging a week later so I cannot really remember too many details...
I cannot remember if his nurse was Valsa... bu I am pretty sure it is...
I am pretty certain that I came to visit during lunch.
My parents came to visit and were so happy to see Chris in such a good mood. He looks much better than he had been. AND he is talking and conversing so much more... He hadnt really had enough energy to talk too much for a couple weeks....
We might have taken another ride in the wheelchair.. I know we took a ride once during the week...
I know I stopped for Dunkin Donuts tea for Chris and I either tonight or maybe the next night... and I got a box of munchkins for the nurses.. I am addicted to Dunkin Donuts tea... yummo... anyways, chris can have it too -- I gave him a munchkin.. i felt so bad but he wanted it so bad and its only a lil munchkin.. he didnt seem any worse afterwards...
Jen (Chris's new sister in law) texted me to let me know that they were officially married. She also posted pics on her myspace. Jenn & Lew got married at the court house near the air force base that he is stationed at in Florida. It was small and casual. Jen's parents and some of their friends were in attendance. There are plans to have a party or reception down the road... hopefully by then Chris will be cleared to travel. He is not going to be able to fly for quite a while (year+) because of germs and whatnot. but once he can be away from home for a week, we can drive for our trips and vacations
We watched American Idol and I eventually went home to sleep

Thursday Jan 22nd. I told Chris that I would not be able to come during the work day today. We had an open house for interviews during the day ... I was not able to break away to come see him.
Chris actually talked to me on the phone today. I called him and he called me back. He told me he hadnt really gone to the bathroom very much. He sounded good... It was nice to be able to talk to him while I was at work. Its been a long time since he has been in the mood for phone calls...Chris told me that he had some new nurse who he never met before... Work was super busy with all our interviews.. but when it was all over, I went straight to the hospital to hang out with Chris...
I saw Tracy. I love her. She was on nights until a week or so ago...
She was one of the nurses who took care of Chris back when Chris was sent to Bone Marrow Unit in June. Nancy, Tracy, Vivian, Padma, Sophie and Liz were the nurses who were assigned to Chris back then. Tracy struck me as a sweetheart from Day 1. Anyhoo, I got to the hospital Thursday and she said hi.. we chatted a bit. She told me that Rose was his nurse. I was confused since Chris told me he never met his nurse before today.
Tracy is so cute. Seems so compassionate... very friendly... strikes me as someone who would be a great mom.. but i was pretty sure she had no kids...she seems kinda bummed about that
I talked to her a few nights prior and found out she is 35, single :( I would have sworn she is no older than me (29)... Apparently the unit clerk is constantly looking to hook her up.. I want to also... she deserves a nice cute boyfriend... so I am keeping my eyes open... if you know a successful cute single guy (I assume in central NJ; I assume in his 30s) keep her in mind... these nurses are like our family and I wish them all nothing but happiness...
Thank goodness I saw Tracy or i woulda been so confused.. She told me Karolina was his nurse in the morning... Rose didnt come in til 3pm or so. So Chris was NOT losing his mind!
Padma came on for the night... I went home after hanging with him all night.

Friday Jan 23rd, I worked all day and Rose was his nurse. When I got there after work, I was prepared to hang out and then go home to sleep... wake up early on Saturday to spend the whole day with Chris because I had our friend Eileen's birthday party to go to on Saturday night... My mom and I were to go to Eileen's surprise party saturday 7pm... which would mean I would have to leave the hospital on Saturday by 520pm to get home and get ready.. that was gonna leave chris alone for quite a long time ...and my dad was going to go keep Chris company at the hospital... My dad and mom had plans to go out on Friday night...
So, I was hanging at the hospital Friday night and my mom calls me after 8pm telling me that she got a call and that the party had been changed to Friday night and my mom was late. I guess they thought they told my mom... but i obviously couldnt get home and ready in time to make it to a party that had already started... So, my mom had to rush to get ready and go without me.. I dont know what my dad wound up doing... but i felt bad for my mom... I think I made her feel bad cus i mentioned that i didnt get to see the birthday card... and then I stayed even later at the hospital, because I no longer had to rush in the morning... but I was really bummed for 3 reasons.
1- I was really looking forward to a girls night out. My mom and I got a really nice gift for Eileen and I was excited to see her open it... I could use a night out.. and my mom's friend made a personalized card for Eileen that i hadnt even gotten to see (my mom talks about her cards all the time)...
2- Not only do I not get out often, but a close friend of mine, Shannon, also was having a surprise party the same night (Saturday) and I said no to the party because of Eileen's. I was bummed that I couldnt go to Shannon's and now it turns out, I could have. I have no luck. It was too late .. I was a bad girl and didnt remember to RSVP to Shannon's on time... by the time I RSVPd to her friend, i woulda felt like an idiot calling on the day-of saying i could come afterall.. anyone who knows me really well knows that i hate feeling like i am imposing or whatever.. and it would be totally out of my character to go to a party after saying i wasnt coming... plus i was invited with guest and would have liked to bring someone with me cus i dont really know anyone besides Shannon.. anyways..
3- I was making really fabulous appetizers for the party. And I bought brie and ordered special sourdough bread and my mom roasted a chicken (to make chicken salad) etc etc.. and now i had nothing to make these appys for... I was just bummed overall. i dont really eat brie cheese normally...

Now, back to the whole thing about me not getting out.. its no one's fault. My priority is Chris... I work all day.. so I WANT to see Chris after work... and he is alone all day.. pretty depressed about being stuck within the 4 walls of the room and that he is still there after 2 months... Since no one visits during the day, I want to keep him company whenever I can....
So, by the time I leave the hospital, its too late for my friends to hang out (usually)... My friends either have babies, go to sleep too early (even my brother is either in bed, or hanging with his girlfriend by the time I get home) And i dont get invited to that many parties (that i could plan for) so even though I am totally fine with not getting out much, i could really use a night out for a few drinks...
I always have intentions of pouring a glass of wine when i get home from the hospital (between 10pm and midnight usually during the week.. depending on chris's sleepiness) but then i fall asleep.. or decide to eat first if i am hungry and then dont want wine

Anyways, Friday night I hung out with chris and I cannot remember if we watched a movie or not.. but i went home around midnight and my mom had just gotten home from the party
Oh, Nicole (the really nice, very caring Wednesday/Friday head nurse) saw me on Friday. I had asked to talk to her or Mary Kate before they left for the day (I got there by 530 and they leave 8pm or later usually) also saw the doctor and he told me that the pentastatin takes 4-7 days to show that its working.. and its now day 4
So, we have to wait.. more waiting... he also told me that they put him back on morphine (they have him on the fentinol patch and had him on IV fentinol for breaththru pain). Chris had told the docs that that was not working so they put him back on morphine for breahthru
Anyways, Nicole comes to talk to me.. I asked her about 2 things
1- Most nurses will not give morphine close to chris's arm (close to the pic line)- Chris asks for it close to him.. and its because he likes to "feel" it... lately, he says he doesnt feel it. I know chris does have pain.. but i also am pretty certain that he also likes it because it helps him sleep or "feel good" and i know he feels like crap often.. but one or 2 nurses will give it to him close.. and one says "i will do anything for him" Well, thats great. I know chris likes her.. but it could drop his blood pressure.. and if its so bad for it to be done like that.. and thats the way its being explained to me, then i have a right to be disturbed that a couple will do it.. mostly because i dont need him getting an addiction any easier.. i dont think its fair to give him mixed stories on it.. and to give him a high when other nurses wont.. hopefully i am making sense to you...
Nicole explains that it is supposed to be given up higher and slowly.. but that if its given closer very slowly (over 2 minutes) and with saline, it is OK... well i am not totally happy but atleast it made me feel a little better. I really could have complained about the nurse cus i have other issues but i dont want to cause any more chaos...
2- The doctors put chris on a regular diet but only so that he can order toast and crackers. Well Chris isnt able to dial the phone really well on his own because of his eye... and only some nurses are proactive about his eating... or noticing what he can really eat. He should only be having broth and jello and juice and tea.. clear liquids, besides the toast and crackers... Well, during the day Friday, he didnt order lunch, so the default meal came and chris cheated and tried the macaroni and cheese! poor guy wanted it so bad.. and had belly cramps, but he has been having belly cramps for a day or 2 anyways.... but i asked nicole if they could put a note on his chart about his diet and having the nurse help him order... so she was cool about that.. she always helps..
Lastly, she said "oh, I gave you Sophie tonight.. i know you like her" She is awesome... We do love Sophie... And that meant we would have Sophie Fri, Sat, and Sunday.. woohoo! Anyone that night would have been fine because Tanya, Isabel, Sophie, and Kathy were on... but we are happy nonetheless ;)

Anyways, I went home late at night and then got to sleep a bit at home...

Saturday I woke up and took my time getting my day started... I called him and he told me he thought he was pooping...
I went to the hospital and Vivian was his nurse.. She told me he hadnt gone since this morning... I went in to the room and he told me it had been a false alarm.. was having gas.. thats good.. better to have gas than unstoppable diarrhea right?
Sorry to those of you who dont want to read about poop.. but this blog is based on Chris's leukemia, transplant, progress, complicatons, how it effects us, etc... and unfortunately right now, the poop is the only thing keeping him here... and if I am counting the hours between his poops and everyone else here is, its kinda the determining monumental occurances ... sorry
Chris and I had plans to go for a ride in the wheelchair later on around dinner time and watch a movie... Chris was having a good day. He had one small poop in the morning and none since.. just gas. I got a little excited thinking things are getting better...
Vivian also told us that if he orders white bread, that she can toast it in the nurse lounge.. wow! very nice... Chris hate the dining service toast cus its soggy and cold by the time he gets it... this is exciting news....
My parents came to visit between 230 and 530 or so... chris was in good spirits again... its a nice visit...
Then Vivian comes in and asks Chris if he knew they ordered a catscan of his bowels... NOPE we did not know... what a bummer.. Chris hadnt pooped in 14 hours PLUS overnight he only went once or twice... and now he had to drink the lovely bottle (or 2 bottles) or barium for the catscan.. that makes you poop normally.. ugh.. there goes the dry spell and seeing if he is getting better... and there goes the wheelchair ride...
Before things got crazy, he placed a phone call to brother Lew for his birthday.. the newlywed turned 22 today! No answer.. he musta been out partying...
He drank bottle one between 6 and 7pm and bottle 2 between 7 and 8pm
We put a movie on... Lady and the Tramp... and watched it... he pooped at 7pm after the drink.. and then again after 8... they took him to catscan at like 10pm
I waited til he got back and Sophie and I asked if he wanted toast.. he didnt... it was late.. I left .. it was probably close to midnight.. or later
He is in good hands with Sophie

Sunday... I woke up and went to Target on my way to the hospital.. I ran out of cashews and was craving them badly.. They are a staple in my poor diet these days... and I also bought 2 movies for me and chris... on DVD.. Enchanted and Open Season. Simple movies are good for us these days...
I have to take Jeanie's portable DVD player that she was going to throw out... we only have a VCR in the hospital room.. and chris can see better if the movie is more up-close...
I bought Superbowl napkins and plates and cups... I will bring them on Sunday for our hospital superbowl party... chris wont be able to see it as well as he would like but we will make the best of it...
I see Dr Strair at the hospital.. Vivian told me he wanted to see me and update me... he said he also didnt know about catscan so we would have to let all that barium get out of his system on sunday and re-look at his poop on monday and see if its getting better... he also said there was no final on the catscan, but that it looked fine... just inflammation (obviously, no surprise, because of all the diarrhea for a month+) I love seeing Strair.. he is perfect... he is direct, but compassionate, super intelligent, dedicated and without false hope, has a way of making me stay hopeful... he is the greatest doctor i will ever know...

Then, we got a surprise visit from Chris's dad, brother Tommy and Danny...
Chris was in the recliner... Vivian and Tracy got him to sit in it while I was still home... Chris seemed a little out of it, but was so excited to have a visit.
They brought more magazines for him to look at... he has to look at them slowly because of his eye, but something to pass the time and look at it...
His dad brought him a new bible, with bigger letters... which is great...
And, 2 M&M action figures.. so cute.. and a model car (Dodge Stealth i think)
They keep chris entertained.. its very good.... its nice to see them so often.. I know it makes chris happy... they stayed a few hours and were planning on making their routine trip to the Old Country Buffet in Edison.. they stop there often after visiting Chris..

Sophie comes on for the night. She makes him toast... he enjoys it immensely.. Sophie even toasted some italian babka sort of bread for him... she is so sweet... but he didnt like it.. so i got to eat it.. yummmmy! Shortly after, his tummy is aching so bad... the pepto, bentyl, gas x, opium, all dont help.. so eventually he gets morphine...
I go home to go to sleep... I wont see Sophie til the weekend

Monday comes and I go to work...
I visit Chris at lunch. Nazmin is his nurse. she told me he didnt want to eat.. but he did do physical therapy and occupational therapy
Chris is seeming depressed again... he doesnt have the tv on.. makes me so sad... he says "TV sucks" I dont know what to do for him because i know he cant see as well as he would like to so he cant enjoy tv or books...
I have to find something for him .. i dont know what...
They are having a baby shower for maryKate the head nurse.. she is prego.. due soon...
At lunch, I asked chris what the docs said and he said "same.." I asked if they talked about the poops.. he said she asked him about it and he told them it was the same.. I freaked.. i dont know why he doesnt tell them he has more gas.. and make sure she knows about catscan... ugh...
anyways, i go back to work and i decided to call Anne Tyno, the nurse practitioner.. She said she talked to Strair in the morning and she knew about it.. they would wait for the barium to get out and see how the poops are... she also noticed that chris was real sleepy in the morning and had different things to say when the doctor and her came back together later... it was good to talk to her...
Chaplain Sharon stopped in when I was there for lunch. She told us she would see Chris on tuesday but had a conference on wed and thursday...
I went back to work and came back afterwards
Jen was his nurse at night. I stayed until late .. we watched Fantasia.. and then it was bedtime

Tuesday January 27th.. I went to work... I know he had Nazmin again.. I called her during the day... my parents and I were going to be there after work. Nazmin said he was doing ok.. I planned to sleep over because snow was in the forecase for Tuesday night into Wednesday. and that way, if they snow was bad, i would be stuck there and not at home.. plus i would be closer to work..
But anyways, I got to the hospital around 530/6... when i walked in, Dr Sedov was doing a bone marrow biopsy... i was shocked.. i watched the end.. i saw him take out bone and they smeared some on glass slides...
He told me that Chris was just given morphine and ativan.. he was pretty out of it...
Dr Sedov explained they just wanted to check... his counts are low and they think its from all the immunosuppresants.. but want to make sure.. that scares the crap out of me.. I told him that his poop seemed a bit mushier the last 2 days.. he basically said it was still happening and although it wasnt getting worse.. it needs to stop... so they are going to watch for another day or 2 and then maybe add another drug...
My parents arrived and we talked while chris slept.. he woke up here and there but was out of it...
My parents left and i hung out.. he woke up.. we talked.. and i eventually went to bed.. he didnt even remember them doing the biopsy,, I tried to watch american idol, but the channel 5 blacked out 5 minutes into the show.. i was so mad...

Wedneday morning, i woke up and decided to work from the hospital,... although i couldnt get into work email.. vpn wasnt working from here... so annoying. so i did paperwork i had with me.. and then checked email from home wednesday night...
Rose was his nurse.. it was good to be there all day cus i got to see the doctors...
I knew we could possibly get preliminary bone marrow results today... if not, then tomorrow
his hip was bothering him.. it made me so nervous because bone marrow is made in the hip.. they thought it could be from the bone marrow biopsy.. but it was his other hip.. ahhhhh and more anxiety
he did physical therapy in the bed... hip hurt too much to get up... Rose was changing him in bed and was pressing on his hip.. he was in such pain... she was kinda rough with him after knowing it hurt the rest of the day.. ugh
Wedneday evening, Isabel was on! yay! I stayed til late at night... we watched Toy Story.. it was nice...
Oh .during the day, John the social worker came to see us... 2 weeks ago he talked to us and said he would look into help with long term disability. Chris thought he applied when he applied for state short term in the summer... Now, he came to tell us we should call a number.. and blah blah blah...
I did... I have a phone interview with social security for chris on the 13th of february... ugh.. so long.. but considering how long chris (we) waited to get this resolved... its ok... i could kick myself for not getting this started sooner.. but time flies..and when chris was supposed to work on it months ago, he would wind up back in hospital... and then i was busy and stressed and preoccupied and before you know it.. its so late.. and he is so broke...
We also had to pay his verizon bill today.. he was 2 months late.. i never paid his bills before.. he was usually well enough between treatments to take care of these things... i am getting worried cus he wont get income for another 3 months at this point and he doesnt have enough for all this bills.. especially when we have pharmacy bills ... i can help with those... but not all the rest
I got them to drop his cell phone plan down... he has a damn smart phone.. too much $$ now... plus he can barely use it.. i have to buy him a simple regular cell...
he signed me and my car up for some damn auto insurance in case something breaks.. and now i need to figure out if i can break the contract.. i dont think he realized he wouldnt have enough to pay for it.. and i wasnt aware of him signing up for it until after... craziness... how time flies and things get out of hand
John, the social worker, also told us that the Lymphoma and Leukemia Association(i think thats what its called) can help give ideas for fundraisers or planning a little.. I think i really need to look into this... it will be a lot of work but i think he deserves it and could really use the money....
So, maybe this weekend I will do some research...
Anyways, Isabel takes care of him.. and I go home
I catch up on the Bachelor.. i love that show
Oh, did I mention, American Idol blacked out AGAIn tonight? ugh
So, my mom calls me and tells me she thinks my dad is getting laid off on Thurs morning... my dad works for Anheuser Busch which is now Anheuser Busch InBev (blah)... he knew there was a possibility.. and it sounds like its happeneing tomorrrow morning.. boss asked him to come in at 6am.. he was supposed to be off on thursday to take care of a court thing for an accident from 4 years ago... ugh... when it rains it pours

Thursday, Jan 29th, I go to work.. Chris has Liz.. I went to see him at lunch... I was soooo nervous about the biopsy... so nervous... but they told me the doc thinks his hip is his muscle.. i felt it and yes, it was very tender... i offered bengay and he said ok.. and guess what?? It made him feel better.. yay! its not his bone
it was probably so easy for him to pull the muscle since he isnt walking and has to turn so much in bed for the nurses...
Chris seemed ok otherwise...
I was told the doc would be in around 3pm to give some results..
Luckily, I ran into Dr Sedov on my way out.. he told me the preliminaries looked clear... woohoo.. what a relief ...
I went back to work... and felt a little better
After work, my dad was there to see chris.. he brought pastina.. chris wanted to try some pasta.. plain... my dad was indeed laid off today... its bittersweet.. the company isnt going to be the same now that they have merged with InBev...poooey... but after 21 years.. it was very fast.. hopefully him and the guys from all these years will get together for a dinner or something... poor dad.. now my brother's friends will have to buy their own beer.. lol
My brother and his girlfriend heather came by.. chris wanted to meet her...
We all watched American Idol together
Chris was sleepy cus he was gettign red blood... but it was nice regardless
then i stayed til 11 or so... and said goodnight
Sophie was there.. apparently she was scheduled and didnt know.. bummer cus i thought she would be there friday and saturday and now i dont know who he wil get friday night

Oh, Thursday night, chris let me give him a pedicure... he needed it bad... dry gross feet... but he hates having them exposed cus he gets cold.. but i gave him a manicure during the week so now he is all good
His mustache is grown in.. starting to get hair back on head.. awwww
Liz got him to eat broth and the pastina and iced tea... so proud...

Ok... Friday i went to work.. didnt hear from him all day..
I got there after work and Liz said he had one poop all shift (12 hours) then he went again around 8pm.. but its now 1130pm and doing good
Isabel is on again.. she switched with Sophie cus sophie doesnt want to be home with her hubby for superbowl..lol.. so maybe we will get her tomorrow and sunday
i was gonna sleep here tonight cus i have Seans birthday party from 12-4 tomorrow.. but i just realized my registration expires tomorrow and i normally pay it online but i am not sure if i know where the paper is..otherwise i have to get to the DMV in the morning ugh
They also gave remicade again today.. it didnt work last month.. but they are trying it again
chris is ok.. we chatted tonight... he ate a little bit for Liz today and he had a Boost.. moving up in the world

Well. thats my novel for today...
I wish i didnt get so backed up.. but it seems ok for a day or 2 if nothing major happens.. then add in a few exhausting days and then bigger news and falling asleep at the laptop, and whammo.. its been over a week...

love ya all
Jenn

Weekend Update, Including Chris not wanting me to leave & Cruises Around the Hospital

Saturday morning... I woke up at home and went ot breakfast with my parents. They dropped me off at the hospital around 10:30am...
I got there and Chris was up... Dr. Strair had already been in -- Chris told me that Dr Strair told him they were changing some meds around for his tremors... I knew this the day before but I wasnt sure if there was anything brand new... and Chris was not sure either...
Valsa was his nurse and I told her I wanted to talk to Strair if he walked around again...
3 minutes later, Strair was in the room...
He gave me an update... Chris is back on Neurotin- should help with tremors. They took him off Cyclosporine, which I knew... replaced by an anti-rejection pill. Cool. They also added another pill to replace the blood pressure med that they had him on
Strair basically said they would see how the Remicade is working and add another graft vs host med before the end of the week if it doesnt work
He had to get to his rounds.. but I asked him if I could wheel him (in a wheelchair) around the halls and whatnot to get him out of the room. (I had asked head nurse Nicole this yesterday)
And he thought it was a great idea. Strair also mentioned that morphine was on the orders when he needs it.. but nothing else... sounds like Strair wants him to stay as un-medicated as possible... Ativan is on order for anxiety, which can also help with sleep

So, Valsa un-hooked Chris from the I-Vs and I took him out of the room. The nurses were like "take him down to the lobby for a while" Soooo me and Chris got on the elevator and sat by the fireplace in the 1st floor lobby... I wheeled him all the way down to the Childrens Hospital.. then down to the atrium.... we stopped on 5north to see his old friends up there... we saw Jolenta...
Then we had to get to the 4th floor for chris to take a bathroom break... but when he was done, he wanted to go back out for more cruising... yay! So, we rode around all around the halls and then we came back... he was tired. Oh, at one point, Chris's pumps were beeping. So we called the bell. The receptionist hear them and acknowledged them when we called. I saw no nurses at the desk. I was pretty sure a lot of them were eating in the lounge.. which is fine.. but someone is covering... patients still get care during nurse breaks... I literally pushed hold 8 times... Each push gets you 3 minutes. Chris called again ... we waited... finally the nurse comes in and starts saying "I cant give you morphine.. i already gave it to you.. blah blah blah" So I interupted and said "thats not why we called... his machine has been beeping" She looked sorry.. but why wasnt the correct info relayed? I feel bad cus when I am not there, that machine beeps and beeps and beeps.. even chris was vocalizing being annoyed...
So, I had my dad come pick me up around 3pm and chris napped. When I got back a few hours later (7pm or so) Chris was excited for another ride!
The tech (someone I never saw before) was cleaning him up and then told us his nurse said maybe we should do it tomorrow instead. Chris was bummed. He was looking forward to the riding ever since I left. Sophie came in - she was not his nurse :( I told her he was bummed. Nina was his nurse but when she came in she said he could go as long as he was back by 10pm... that gave us 2 hours.. woohoo... We love Nina too... Chris does very well with her... She has a way of getting him to take his drugs easily and listens to her... She is a sweetie...
So we went for another ride. We went back up to 5north and were lucky to see Mary and Ade... his 2 favorite night nurses on the 5th floor. We finally got back to the 4th floor and Chris was able to get to sleep much easier....
Ade came up to visit later but chris was asleep...
Even though the diarrhea had eased up during the day, he had a rough night :( I slept there and he was up often. Luckily, he was able to sleep for a few hours before the diarreaha acted up...
Again, at 8am Ade came to visit, but Chris was getting cleaned up
We even saw Vanessa and Dustin, 5north techs Saturday night and Chris was happy to see them

Now it was Sunday morning. It was Christine Rabbath's birthday. I told Chris the day before and Sunday morning, that I had plans with Christine, our moms, and Dana, to do lunch. And, Christine was going to help me organize all Chris's bills, paperwork, etc...
So, Sunday morning, Chris finally recovered a bit from his rough night. Strair came in to see us. He asked who from psychiatry had been in to see him already. Chris said no one. Strair said someone would be coming Monday. He agreed Chris needs to feel better mentally...
He said that the graft vs host is only in the GI tract. So thats their concern. (I was thinking, atleast its not in multiple places at this point)
He said that if it wasnt better by Monday, they would add the new drug...
He was excited to hear Chris was getting out in the hallls (he saw us up on the 5th floor yesterday) He said "see you out in the halls later then"
Oh...
Dana gave Chris a shirt. I brought it to him Saturday. It says "Colorado.. Hows your Aspen?"
Get it? Hows your ass been? funny?
Chris loved the shirt
So I showed it to Dr Strair on Sunday morning. He got a kick out of it too
He said it would be great for him to wear once he is out of the hospital
We showed the nurses the night before. they got a kick out of it too

So, Sunday Strair was done with him and Chris wanted to go for a ride before I left. I had to leave by 1030am to get home and showered. Then be back in the evening

So, Chris calls for help. While we were waiting, we decided to try it alone.. you know.. the long wait.... I only had an hour or so. Chris put his arms around me and he stood up and I helped him into the wheelchair. Rose came in and she disconnected him -- we went a ride... back to childrens hospital.. back to 5north,... back to 4th... around the hall in circles...
Then i brought him back to his room... I told the nurses he was ready to get out of the wheelchair...
Chris looks sad. I asked what was wrong. He said he was not ready to go back to his room
my heart was BREAKING.... I wanted to cry... A few days ago he was kicking me out.. now he was loving the rides so much.... so Paula came in to help with wheelchair... but I mentioned to her that he was sad and she offered to take him for a ride.. i thought he was going to leap for joy.. he was like "lets go" so that made me feel better as I was leaving
This is exactly what I fear. I leave every weekend to do my things at home.. and he is usually like ok, whatever... but when he is like this, i feel so bad....
its not like the nurses have time to just be wheeling him around...
It is motivating him to keep up with physical therapy.. when we walk around, he says "walking next" or when we pass by the doors to outside he says "they will be my doors soon" Poor guy.. cant even imagine what he feels like.... but i am happy i can take him downstairs...
Anyways, I feel terrible that he doesnt want me to leave. It would have been a great time to have a visitor who coulda wheeled him around. A few weeks ago, visitors would watch him sleep or get very little conversation time... now he can be more interactive...

I had a great lunch with the Rabbath women and babies. Then Christine was a tremendous help with the paperwork. Ben & Sean are so cute. Ben loved his presents (we finally did Christmas presents) and then I went back to the hospital
I called rose on my way -- he was unhooked when I got back
So, we did a 2 hour ride again Sunday night.
I brought him Dunkin Donuts tea (he cant have coffee right now) and we had a date with tea as we rode around... the nurses were excited to see him in the halls... Carroll hadnt seen him in a couple days.. and Jen..
Oh, the night before, Sophie gave him chocolate, orange jelly, Polish candy.. shhh... didnt seem to do any damage.. but its clearly not a clear fluid... he was loving it...
So anyways, last night, Sunday night, after our long walk and stuff, he was tired... so we got him in bed and Nina was his nurse again... we had a good night... he fell asleep.. I slept over...
He only needed to go 2 times overnight...
This morning, we woke up and Karen is his nurse.
She wanted him to get up into the chair so early... intentions are good. but i know he wasnt ready... he wanted to get in the wheelchair and ride but not til the doctors did rounds so he could be done with that.. but she talked him into getting up into wheelchair.. then we waited and Chris was getting frustrated cus he wanted to be disconnected and go... Karen didnt realize that... Dr Strair had today off (i guess for holiday) so Dr Gahribo was seeing him.. but Strair was in the halls all day.. weird.. that man never gets a break... God Bless him

So, Gharibo sees him and is happy to see him in a wheelchair.. she says they will monitor bowel movements one more day before deciding.. also the psychiatrist is not coming (holiday...) bullshit... chris really wants to see him...
so tuesday supposedly.. i have been hearing "word" of this for a week... i think tomorrow it will really happen though

So Karen unhooks him and we are off... I am feeling very tense... he really needs to get out of the room.. he enjoys it.. its good for him mentally.. and i run into an obstacle after a breeze.. after an ostacle...annoying.. i think i come off as snotty but i dont care.... i dont know what to do

So, we get back from our walk. We saw Sharon. Chris initially was going to go into the recliner but was wiped from the walk.. so he wanted bed... Karen and Jen come in to help move him... and were talking about him going to chair... he isnt saying anything.. so I had to ask him if he wanted to say anything... he was JUST arguing with me and insisting he was too tired to sit up any more.. so I feel like the bad guy or the bitch for making him talk.. but i could tell he was uncomfortable... If i felt he was being lazy or silly i would keep my mouth shut

So, he rests briefly and agrees to eat some lunch
I go to warm up his tea and broth... and the toast he is now allowed to have... and they tell me physical therapy is here for him... its noon.. he JUST laid down after being up and about.. i am fuming internally... She comes in the room as I am giving chris his lunch and nurse says maybe do therapy first.. i want to scream... he needs to eat... first time all day... and he needs to get a break.. and what happened to PT being around 1:30 everyday? how can he plan? He is supposed to do his own getting around when they arent there... ya know?
So, PT notices lunch and she says she will be back in 15 minutes...
whew... So I told Chris he needs to speak up.. I feel like I look like the blocker or the bitch for opening my mouth and he told me he would and stuff... he also told me to go rattle some chains...lol.. he was annoyed about the inconsistancies
So... I saw the outcomes manager nurse Elena and spoke with her.. and PT...
Chris did physical therapy and I watched... She asked me to follow him with the wheelchair as they held him up with chris holding the walker... I was confused.. there was NO room behind him for the wheelchair.. and why??? arent they supposed to make sure he doesnt fall? ugh
So, i am looking at the foot rests on the wheelchair and i am thinking.. if he starts falling.. the wheelchair isnt going to catch him.. his butt will never make it to the seat... but i shut up
He takes a few steps slowly.. i am proud.. but it sucks how hard it is for him
Therapist told me he was able to walk a bunch more steps than that last week but its ok, meds and stuff cause weakness to fluctuate during the progress
So... he gets weak and is falling... i had to fight to get chair behind him.. "told u so"
Anyways... before falling into chair,, he was getting dizzy... she told him his body is not used to being in that position... so she asked if he could do leg exercises and he did... the dizziness slowly went away
She didnt stay too long.. asked him to sit in wheelchair for a while.. mentioned sitting there for an hour and having lunch in the chair.. ummm he just ate duh...
anyways.. i sat hext to him until he was ready for bed...
He finally dozed off and the rehab doctor came.. DO WE HAVE TO WAKE HIM UP? are you that important? i mean, he isnt going to rehab that soon...
so he is alarmed at being woken up...
Then Occupational Therapy came and he was just beat...
He had more diarrhea... so i guess we will see how the night goes and they will make a decision about new drug tomorrow
ugh... I feel so bad for him
Chris started to freak out a little bit and i calmed him down...
Isabel is back tonight.. love her
He is sleeping now..
I am gonna get going.. I have been here for 27 hours... time for home.. time for dinner and Rex and shower....
I pray her has a good night... maybe we will get a miracle and his diarrhea will stop tonight and tomorrow will be better.. new president new health? I hope...

Tonight he said "come here and make me not freak out" so i did.. gave him the pep talk... i begged him to sit up whenever he can and take deep breaths.. reminded him how high risk he is for stuff and pray he continues to be motivated... ugh... i told him to occupy himself more during day so that he sleeps easier at night..
but i just want the Graft Vs Host to settle down

He said something funny to me earlier...
He was saying how perfect i am.. something about having me in his life now and whatever.. anyways.. i wish i could quote it.. but he said something about perfect cheesiness... and said it was like something perfect and then adding cheese and melting it and it being so yummy and good..lol.. he said it was a food metaphor.. very cute.. but funny...
Oh, and Olivia is a child prodigy.. she plays the piano like a champ... girl is going to juliard one day... jeanie sent me a video of her playing piano yesterday and chris and i were both super impressed

Well, tomorrow is inauguration. i hope i can see it somewhere at work... not sure if i will get out to see chris at lunch.. so i am gonna try to see him in the morning before work...
I will pray extra hard tonight... there are a lot of people who need it... Jeanie's friends & everyone...

love you all
jenn

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