Oliver has now got his NG tube out!! Accident rather than design, he drank too much juice and wretched it out. So we decided to trial it being out. He is taking his medication by mouth, he is eating and drinking normally now, going to the loo for a pooh about 4 times a day and we are hoping he has turned a corner. GOSH have also said he can have his hickman line out, but our local hospital are hesitating Im on the verge of saying just take the bloody thing out!!!!! He is only having bloods done now every three weeks and I don't see the point in him having his dressing changed and the line flushed every week for nothing, just waiting for him to get an infection in it.
We saw a surgeon at Sheffield yesterday and he does not think Oliver has hirschsprungs disease and he is not going to perform a biopsy at this time. Oliver will have a follow up appointment with the G.I doctor in October.
This is great news are we really are keeping everything crossed that he has turned a corner. Bless him he deserves it. Please join us in hoping and praying that this is the case.
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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
1 comment:
My grandson Oliver age 5 months also was confirmed today at Bristol Childrens hospital as having WAS. It was devastating news to us all but easpecially to his mother, but I was very touched by your blog which I`m sure will be of great consolation to his parents.We know the road ahead will be very difficult for our Oliver and his family but your Oliver`s story will fill us all with optimisum.Your Oliver must now be 11 years old and it would be great to receive an update on how he is hopefully living a full and healthy life.
I have been researching all night and at 0130hrs this has been music to my ears and the most helpful and positve thing I have read all night.Iwill retire to my bed a much happier granddad than when I received the news at 1800 hrs today.
Many ,many thanks for the huge effort,honesty and courage in blogging during such difficult times.
Best wishes to Oliver and to all your family.
Gordon Friend
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