Ive not updated for a few days due the the rollercoaster of events and being shattered!
Things have been a bit rough to say the least, we have had (in no particular order) vomiting, diaroehha, NG Tube coming out and having to be replaced - what fun!, Really bad trapped wind that ended up in an x-ray, extreme reaction to the IVIG, which peed me off as I told them to pre-medicate him first and they didn't and voila! Hives, vomiting and fever, extreme reaction to a unit of platelets, massive explosion of wind and pooh everywhere.
Oliver in the playroom
We think the trapped wind is originating from the milk feeds being pumped in overnight and also the stomach cramps. We are going to put our foot down tonight and he is NOT having the milk. He is eating and drinking little and often orally and we don't mind his fluids being topped up via IV but the milk is what we have put it down to by process of elimination and now he has got rid of all the wind etc, we don't want it to build up again. Will speak to dietician about alternatives.
On the positive side, his WCC , Neutraphils and Lymphocytes have been as follows:
D +14 - WCC 0.21, N - 0.06, L - 0.02
D +15 - WCC 0.27, N - 0.12, L - 0.02
D +16 - WCC 0.51, N - 0.31, L - 0.03
D +17 - WCC 0.53, N - 0.33, L - 0.03
D +18 - WCC 0.82, N - 0.68, L - 0.03
So from D +17 we were allowed to come out of the cubicle and into the playroom - god what a relief!!
The consultant says that if he continues to rise like this, they will be testing for engraftment towards the end of the week. Please join us in hoping and praying that we will get 100% donor.
The next issue is his platelets holding, we gave him the last platelet transfusion yesterday and we are hoping that is the last one.
He has now lost most of his hair and has just got some baby fluff left, which I can't stop stroking, its like velvet!
Signing off for now, and again thanks so much for all your support.xx
4 comments:
Bless him!
Its great his has been allowed into the playroom!
will write again part 2, Gigi is doing a movie on movie maker and wants her laptop back. Love Tracey and co
Dear Debbie Dave and our little friend Oliver,
What a relief he is now allowed a little time out of his room, it sounds like you have been put through your paces with one thing and another, but what encouraging news all the counts are improving day by day. Fingers are now crossed for that next step!
In our thoughts and prayers - always, Love Tracey, Richard, Olivia, Gigi and Philippa XXXXX
Wow...a rollorcoaster alright! But hey, look at those numbers; that is realy fantastic news! Having time out in the play room must be such a good feeling too. Hoping all news continues to be good. Best wishes, Bee and Max
great news about oliver being allowed in to the playroom. got our fingers crossed that its all good news from now on. there was a little boy on the front of our local paper the other week with the same illness and is waiting for a donor. we are back at the consultants with Lily on 18th june she has lost 2lb since feb but eats like a horse so hoping everything is ok. will keep checking the blog and sending all our love. Alison xxxxxx
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