We have been given the 'weekend off' from Sheffield Childrens hospital. Oliver has made good progress and is asking for food and is allowed a light diet. We have yet to see if he will have a pooh on his own without the need for laxatives. He has had a bit of tummy pain but that seemed to co-incide with starting him on a higher calorie milk, so we have changed it back to the original.
He is on an overnight milk feed now which we can do at home with the help of a pump which will give him both fluid and calorie intake and will help us all enormously.
We went to GOSH on Wednesday 1st July and apart from the sweltering heat and the 7 hours in total in an ambulance it went well. His consultant wants to start weaning him off the ciclosporin which we will do over the next 6 weeks, magnesium supplement and amilodopine (for high blood pressure, caused by the ciclosporin!) will follow. He has also been taken off Itraconazole. All being well GOSH don't want to see us again for another 2 months and are happy for Sheffield to Manage Oliver which is great news.
Olivers platelet count was at last FBC 252K which is fantastic. His hb is still low and lymphocytes still low but all other counts within normal range.
We return to Sheffield Childrens hospital on Monday for his immunoglobulin and for further assessment. If the weekend goes well we can be discharged and continue with the milk feeds etc until such a time he does not need them.
We are really happy with the care at Sheffield and will be grateful to them for the progress Oliver has made.
Will keep updating as events happen
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This Blog is to share the journey of our Son Oliver living with Wiskott Aldrich Syndrome and his subsequent Treatment and Bone Marrow Transplant
Oliver at 5 months
2 comments:
Dear Debbie, Dave and our little friend Oliver,
It is great news about GOSH, and lets hope Oliver can get his digestive system working without the need of laxatives, all in all i think he has done amazingly well. We are all very proud of you. You have kept focused and positive. We hope you (Debbie) and the little one are also doing fine, it can't be easy in the heat!
Love, thoughts and prayers are with you, Tracey, Richard, Olivia, Gigi and Pips.XXXXX
Hi Oliver, Deb and Dave. Wonderful news from GOSH. Excellent platlet count. Glad to hear you have been de institutionalised for the weekend. That may help to improve things not only for Oliver but all of you. Hopefully, things will settle down sufficiently that you can be discharged and be at home next week for the duration. We are keeping updated through Linda. Geoff home on 17th and we may do a flying visit through to see everyone. Thinking of you all and send our love to you. Sue & Geoff xxxxx
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