Another couple of weeks have passed and I’m still here and there’s been no real changes.
My stoma output is still high which is restricting how much feed I can have. Last weekend Mummy and Daddy had a scare as my stoma output had a lot of blood in and I also had blood out of my redundant bottom. I had an endoscopy and ileoscopy on Monday which showed I have colitis, which is inflammation of my original bowel so I’m having steroids. Everyone was worried it was internal GVHD as my skin was going red at the same time, but thankfully it’s not!
My skin had started flaring again but I had one day of ECP (my line was being naughty so I missed a day) and steroid cream and it’s now looking OK.
The opthalmologists had been pleased that my eyes were stable but this weekend they’ve got more sore and so Mummy is going to have a chat with them. I’m still having hourly eyedrops and with talk of me going home Mummy and Daddy need a plan as they can’t be getting up in the night to do my eyes and I’m getting pretty cheesed off with being faffed with all the time. I’m the only child in the UK with eyes so bad from GVHD so the opthalmologists are speaking to the Sick Kids Hospital in Canada for advice!
I had a good start to the week but have been a bit grumpy for the past few days. I also went to theatre again on Friday and now have a new broviac line for my PN. Mummy and Daddy have started PN training again so hopefully they’ll soon be flushing my line and putting my PN up so they’ll be ready to do it at home! Today Mummy flushed my line and put my PN up for the first time.
Ella is also becoming a very good nurse! She’s been too busy playing with her friend Madiee to come and play with me, so I have to shout at her when she comes in the room. Her dolly now has an NG tube and a stoma bag!
It was also Mummy’s birthday so Daddy and Claire the play worker helped me to make her a card and decorate my room for her. Daddy tried to make sure Mummy had a good day even though we’re in hospital. Mummy and Daddy don’t seem to have many friends left, because of me I think, but the ward got Mummy a card and present and that made her happy and Nanny and Grandad got Mummy a nice present and looked after Ella so Mummy and Daddy got to go for dinner.
That’s it for this week!