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