Now on D +134 and time is passing so fast. Olivers blood results remain stable and he is still 100% donor engrafted which is excellent news. His tummy problems have continued however and he had an MRI scan at Sheffield Childrens hospital to see if that uncovered anything. All it showed is that his colon is quite 'baggy' which can be a sign of another congential problem - hurschprungs disease. This however usually presents in infanthood so we are talking about having a biopsy done to be sure - however GOSH do not want this yet because he is still so early out of transplant. If it is that it will mean a surgical procedure to put it right so looks like we might not have dodged hospitals quite yet.
He is starting to show signs of going to the toilet without laxatives though so I suppose only time will tell. There is definately a physcological barrier there too as he said he does not want to do a pooh as it hurts his tummy.
He is now off cyclosporin, metoclopromide and itraconazole oh, and magnesium so we are slowly getting to a point (if he continues to eat properly) that his NG tube can come out. GOSH have also said that he can now go to three weekly blood tests and that in theory his hickman line can come out. Thats a huge step forward and a big infection risk gone so Im chasing Sheffield now as they should be able to do the procedure to remove the hickman line.
Other news is that we have had our baby! Adam Stanley Wootton was born on 2nd September 2009, at 18.23 by C-section weighing 9 pounds 14 ozs! So Im now in isolation too (well i can't drive for 6 weeks) Im beginning to know how Oliver feels. He is absolutely adorable but its hard juggling a newborn and a toddler especially a toddler who is like a caged lion at the moment.
Must go as Adam is calling for food he is such a milk monster - thanks for your continued interest and support. I hope you join us is hoping and praying that Olivers tummy problems pass on their own and he continues to keep that precious engraftement.
love to you all
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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
4 comments:
Hi Deb,
Hearty Congratulations on the little one! I hope that he is an easy baby for you, so you can have some more time for Oliver.
I hope that all his colon troubles are benign and pass without the need for surgery.
Sumathi
Hi, Debbie! Congratulations on the new baby. I love his name: Adam. It's so great to hear that Oliver is coming off of the medications. What blessings! I hope all goes well for you and your expanding family. Stressful, but blissful in other ways! Take good care!
Hey you lot,
Congrats on the new baby! And well done, Oliver. It sounds like you're all making great progress.
Best wishes from Martin, Fleur and Lottie.
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