It’s been a while since I updated you, I’ve been too busy sleeping!
I finally got off the ventilator and back on ward 8 about 3 weeks ago and quickly got off the oxygen. I’m also on overnight feeds now and have two bolus feeds of a whopping 150ml in an hour. I’m still having weekly ECP as the lovely ladies from Rotherham have been coming down to treay me. Me and Mummy got to meet Sarah-Jane Marsh the CEO of the hospital and the Chief Medical Director the other week who knew all about me and now realise how important ECP is to me.
The downside is that my eyes are still really sore from the GVHD. The opthalmologists have been keeping a close eye (pun intended) on me. Last week my left eye was pretty much healed and my right eye was still damaged, but yesterday I saw the opthalmologist again and my left eye has deteriorated again. Mummy and Daddy now know why I’ve been so grumpy and sleepy for the last few days.
My eyes are so sensitive that I can barely open my eyes and so Mummy and Daddy have to sit in the dark and I have to wear sunglasses if I go out. It’s great when I see the opthalmologist as they put some magic drops in my eyes and I can instantly open my eyes and see without it hurting and for a short time I’m happy Oliver again…they wear off too quick though :evil:.
Yes, you read that right, I can go out now! Most days I go back to Ronald Mcdonald House for a few hours in the afternoon…where I mostly sleep! I’ve been on a few walks too but because I have such a weak immune system I can’t go anywhere busy which means Mummy can’t go shopping (much to Daddy’s delight).
On Sunday it was Daddy’s birthday and I was allowed out for most of the day so we all had a birthday lunch for Daddy at Ronald Mcdonald House with Nanny and Grandad and my silly big sister Ella.
That’s about it for now, I’ve got to wait and hope my eyes get better and also get my blood pressure under control. I want to be home for Christmas!
Lots of love