Day +25

I've tried to pull myself to the computer all day...but I, for once, am at a loss for words...I know shocking huh? I feel like we were making great progress only to be backed against the wall and now we are at that wall pushing all the bricks to see which one will open the secret passage. One thing, if you know us, we will push every single brick till we find that passage and I am positive that there is a magic brick. It just takes patience and lots and lots of faith. Something I learned a lot about...say oh almost 8 years ago when another child was here! So we keep climbing back up on that really high horse no matter how many times we get knocked down, or feel like burring our heads in the sand, like I felt yesterday.

Day +24 was a day that felt to me a waste. All she did all day long was sleep. I'm sure not by her choosing. She has been getting benadryl for premeds and then she is getting ativan for her continued nausea, which unfortunately is brought on by the extremely strong antibiotic. She was up maybe four hours or so which started at about 5:30. Then all night changing the bed pad and underwear.(she will kill me for this one day). Along with the nausea comes diarrhea....not fun...we had tried to switch some of her meds to oral, but she is unable to keep it down. So I won't worry about all that right now, because I know that she needs this strong antibiotic to get rid of what they think is cellulitis in the jaw, cheek and under the chin area!

So today was a little better, we tried to get out the room and do a lap or two..but we were only able to do a half one, so we stopped and picked out the movie Bridge To Tarabithia. She watched it and stayed awake through all of it. Her bone marrow biopsy results came back at 15% cellularity, which is right where they expect it to be at this point and she is all 100% donor!! Meaning it is working and her marrow is all donors and not any of her own! Great news. Her counts for today were
WBC 6.1
ANC 5.2
HGB 9.9 and
Platelets 13
I am sure she will need platelets tomorrow.

She is unfortunately back up on her weight because that is one of the meds that they tried to switch to oral, lasix. SO today and tomorrow we are going to be trying to play catch up to get her back down to where she was.
I am completely exhausted, I've been here for 4 nights, only leaving long enough to run the the RMH to get a shower and back again. I totally, at this point, feel that two steps forward 4 steps backward saying. I really want to see forward motions from here on out. We just need this infection to go away. ENT said if it would abscess or go to one "pocket area it would be a little easier because then they could go in to the OR and drain it. They are keeping the strong antibiotics going as to avoid any MRSA! So please continue to keep her in your prayers. Pray that we find that magic brick that leads us down the path to getting out of this hospital!
Until tomorrow...
Blessings,
Kelly

Thought for the day:

Don't ask for a light load, but rather ask for a strong back.
- Anonymous