We Are Done With Day "PLUS 5"

Well, we have been in the hospital for 15 days now...
Its been 5 days since Chris got the new stem cells...

And, Its been 5 days since I wrote on the blog... but I am sure most of you took 5 days to read my last blog.. so its ok

Chris's nausia has continued now since Dec 7th or so.. The vomiting has been going on since Dec 9th-ish... but its once or twice a day and only bile because he isnt eating...
There are 4 different anti-nausia meds... and they keep him somewhat comfortable..
The diareaha started Friday or Saturday and its not more than a couple times a day.. sometimes once...

Sunday his throat started hurting and since then, its been his biggest complaint...
He had been having stomach cramps since the vomiting started.. and the pain was controlled by the pain meds.. but now with the sore throat, he is miserable...

A few times he has mentioned that if it werent for the sore throat, he would feel "OK" - relatively speaking of course

They totally expect sore throat (all the way down throat and esophogas, entire tract), they expect mouth sore, fevers, nausia, etc...
This is all from the chemo. The chemo he got bottoms you out and empties you for the new bone marrow.. therefore he has lost cells in his body (in the mouth, everywhere) which would normally protect, coat, etc... so he is miserable, but "normal". They give him special grade 3 mouthwash a few times a day, and then every 6 hours he can have lanocane (spelling) to help numb the throat.. but its doesnt work too great..
Today they gave him a spray cloraseptic which he says gives him some temporary relief...
Because of the nausia and pain from swallowing, all his meds are IV--- not orally...
There are so many incompatibilities with the meds that they have to run them all separeately, or a lot of them anyways, and it uses up all his pumps so his TPN (liquid nutrients) dont get to run as much as they could...

They tried a morphine drip on Sunday which he was controling as needed.. but it barely took the edge off with the tummy pain... and they stopped it and went back to dilaudid prn (as needed, every 3 hours)

On the weekend, he was pretty alert... the mouth pain wasnt bad yet... and his ativan and dilaudid was at a minimum,.. but he is drugged up again and doesnt even hear his phone ring...

Dr Weinstein and Dr Hart from Infectious Disease are on the case... making sure they do everything possible to prevent and treat infection... I met Dr Weinstein yesterday (monday) on my lunch break when I came to see Chris... I knew he was Dr Partridge's dad (his plastic surgeon from finger and thigh biopsy) and boy, now i know where she gets her awesome personality and brilliance from.. her dad is just as wonderful.. what a great family...

Monday they found out that he is c-diff positive... its a very common bacteria that patients like him get (they tested the stool) so now he cannot get immodium until that is cleared up... They test for that always after diareaha starts... we have been thru this twice before. this is the 1st time he was positive...
luckily he is only going a couple times a day...

Up until tonight, he hasnt had any fevers.. Tonight they did cultures because he spiked a 100.8 temp... it broke 2 hours later

Anne, the nurse practitioner who rounds everyday with the docs, said in about 1 week (next Tuesday) we should see counts come back up... Once that happens, the white counts will start fixing his sore throat and whatnot.. and he should start feeling better... then it should be time when they see engraftment (new bone marrow taking over his body.. ) and we will see how that goes... we could run into complications or bad side effects...
this is when we want to see some graft vs host disease, meaning that the new marrow is noticing differences and indicates good chance its noticing the leukemia in his body and attacking... we could see graft vs host next week, not until a month from now... not at all.. and also could be very very bad (why the transplant is so risky) and we could see it continue at a chronic level for 1 year.. 2 years.. even 3..
Its a pretty good chance that we will see some graft vs host (GVHD) because the donor was unrelated
But, we dont want anything too acute... thats bad
It could show up as rash (they would biopsy for GVHD), diareaha, lung/breathing issues, liver (check the enzymes for GVHD) etc...
So, when his counts are up and things look good, he can go home.. but then the 2-3 times per week appointments start.... and blood tests happen for months...
They continue checking his blood to make sure its still the donor's and we take it from there...
but back to today, we are still waiting to see engraftment next week... and pray he doesnt have rejection

Friday, nancy was off so Rose was his nurse... She made me feel sooooo bad that morning. I had been at the hospital with Chris all day Thursday for his transplant and on Friday morning I had to go to work and she was like "awww you have to leave?" and she went on and on asking when i would be back.. yea, try not to make the loved one so upset please

Friday night Tanya and Isabel and crew were back on. Isabel was his nurse and all was good in the hood... Nancy came back Saturday and was Chris's nurse on Sat, Sun, and Monday... Sunday night and Monday night he had Myrle... and Tuesday (today) we had Melissa (YAY!) Tonight Isabel is back.. and TOmorrow Melissa will be back
Nancy comes back Thursday... She takes such good care of him... He has lucked out with the best nurses since Wednesday...

Chris is concerned that he will get the nurse that makes him uncomfortable and wanted me to talk to the head nurse about it. Remember, I asked Mary Kate for Nancy and we didnt get her for transplant day or the other day she was here after I talked to Mary Kate. Well, when I saw Mary Kate yesterday there were a lot of nurses around.
So, Chris was going to ask to talk to Mary Kate. Anyways, he asked for her yesterday, she stopped in and Chris told her he needed to talk to her about his nursing needs and she said she was in the middle of 5 things and would be back...

No mouth sores yet.. but he might get them soon.. or maybe just have the really sore throat til counts go up

One of our fave nurses Tanya is pregnant.. I feel like these nurses are our family... Its a very special experience

My parents and brother visted a bunch of times ... I squeezed in a haircut on Saturday... she went scissor happy and cut too much...
oh well.. I still need highlights.. I got a pedicure with mom Sunday morning and was supposed to do lunch with Christine Rabbath but by the time i waited for my mom to be ready and me get back to hospital for lunch with christine... i fell asleep at home and then it was late... but we will reschedule

Chris's bro Lew and Jen are getting married September 26th of next year... We got the save the date ;) Grandma Phyllis sent Chris and I a Christmas package... stockings and prayer cards and slippers for Chris and a nice musical santa for me...
Chris got his Grandma Peter's Chritmas gift in the mail too... Its fun being Santa and bringing CHris's mail and packages to the hospital

I should go home soon... I went to Walmart at lunch and got Christmas shopping majorly accomplished... Today, I got done with Ben, Olivia, Jeanie, half of Christine and Mike, part of my Chris and a few others (not all at Walmart) All I have left is my parents, rest of Chris, my Godson, and a few odds and ends... I think... I have to look at my list again... But today was a big dent in the list
Tonight I have to finish my Christmas cards.. i brought them with me here and havent done much :(
gotta get those in the mail tomorrow

Its 1130pm and Chris is alert suddenly
I am dreading driving home in the icey snowy weather.. i dealt with it at lunch for shopping.. hail and rainy snow... ugh

I havent even done Christmas oookie baking ...

I have to find time to deep clean the bedroom and bathroom at home... things are supposed to be super clean and sanatized for 3 months for Chris.. I have to get Rex's litter box moved... chris shouldnt be near it.. its currently in the bathroom... and i have to get the maniac's nails cut (Rex)... he launches himself on my shoulder everytime I come home and its hurting more these days...

I am really looking forward to my Christmas week off... I need it... so tired

My boss has been very understanding and flexible with my time. I come here when important things happen here and work from here, late at night to catch up from home, and weekends sometimes and I am so lucky to have that flexibility right now...

I dont think I have much more for ya'll tonight.. I have pics to post from transplant... talk to ya all soon

xoxox Jenn