Transplant Day +20 - the hard yards continue

Seems things may get harder before they get easier....


Todays stats:
white cells 3.72
neutraphils 3.0
platelets 39
Bilirubin 51 (due to dehydration we hope... it needs to be less than 24)


For a short period yesterday, Logan appeared to rally and settle... but it was all just an illusion.... designed to lull us into a sense of false security.  We spent the night (the whole night) bouncing between bed and bathroom with me sometimes being unable to wake when he needed me and the nurse taking over. It definitely appears to be gastrointestinal GvHD.  The literature is not to positive, but like everything it comes in differing scales.  Our evening nurse last night (who I think is part angel), explained it's variables to me and the possibility of it lasting months with the time between bouts becoming longer and the length of each bout becoming shorter. No-one explained this to us, so it was important for us to know.  The steroids he is on 'may' be decreasing the cramps, but it is hard to tell.  He is taking much higher doses than recommended, of buscapan. But it's all that is helping. The morphine is useless.


Since yesterday morning, Logan has had a nurse 1-1.  It has been especially excellent when trying to co-ordinate his pain, and meds, and bathroom visits and bed changes. Sometimes it even takes three of us! But just like a pregnancy, which can also be an awful experience for some, this is time limited (hopefully) and we will endure.  Evan and I spend a lot of time thinking of ways to cheer up Logan... he has reached an all time low, and being the eternal optimist that he is, I think it is an emotion he is finding difficult to come to terms with.


Speaking of Evan, he was called on deck just after 6am, when I reached my limit.  It's great that Ronald McDonald house is so close... he can be here in minutes. In the 2 1/2 hours that I slept after this, Logan visited the bathroom 6 times and each time always lasts at least 20 minutes... so you can imagine his exhaustion.


I have been awake since half 8(ish), and it's now 9.50 and Logan continues to sleep... it's his longest nap in ages.  He poor bowel, apparently, has lost its lining, and it ability to do it's rhythmic squeezy job properly.  This has resulted in Logan's bowel turning into a water slide... actually, cancel that picture... it's not pretty.


Oops... that will teach me, he just woke again and we did another rush to the bathroom.


I'll leave you with these pics... 

The CanTeen quilt that Charlotte has been given made up of CanTeen scarves creates a colourful impact in Logan's room and reminds him of his sisters love when things are crap!

Logan's whole body has begun to peel.  This picture doesn't show, but his whole body is going quite brown and then peeling. (And I do mean his whole body).

I know Logan... you hate me posting photo's of you sleeping... but this one is soooo cute! Humour me!

Hugs to all, and to all.... ow! brain hurting... cant think of anything interesting to write....


TTFN
Tracy