So after the drama of a cornea transplant I bounced back very quickly and was soon off oxygen. Kevin one of the Ophthalmologists was really pleased with my eyes and was happy for me to go home for the weekend and then for Christmas too if they remained good….
On Saturday though my stoma output went crazy. I usually have 250-300 mls out a day, on Saturday I had 1300 out so by Sunday I was very dehydrated. Mummy, Daddy and Ella arrived on Sunday morning expecting another good day but instead had to get the doctors to review me and I was quickly given some fluid boluses as my blood pressure was very low and I was struggling to breathe so needed oxygen. It was a scary day for everybody and I nearly had to go back to PICU.
Ella also got to meet Elsa!
I had lots of tests done and a stoma biopsy showed I have mild rejection so last night I had some super strength steroids to help. Today I have either been angry or asleep! It’s crazy that it’s rejection after I had GVHD which is the opposite type of rejection. It must mean my body has decided to fight back…but maybe too much.
That’s us here for Christmas now. Mummy bought the world’s smallest Christmas tree for their room at Ronald Mcdonald House and Ella put up some fairy lights. Mummy and Daddy have tried to make sure Ella has lots of fun too and on Saturday night they went out for a Chinese which Ella loved!
Mummy and Ella enjoying dinner
I need to say thank you to Sainsbury’s and Nivea who have been very kind and donated some goodies for the ward and Ronald Mcdonald House.
I’ll try to behave now or Santa might not visit me.
Well, I had hoped I was home to stay but my GVHD seems to have other ideas. I started getting a bit of a cough and cold a couple of weeks ago and that seems to have caused my GVHD to flare again as about a week ago my face started getting red and it’s breaking down now. I have a couple of new patches on my body too.
My poor sore face
Daddy took me to Rotherham for ECP last week and Dr Alfred had been hoping to reduce my steroids, but instead I’m now on 10mg everyday to try and get the GVHD to back off. As a result I’ve only had one happy day which Mummy, Daddy and Ella loved….but since that I’ve been pretty miserable and sleeping lots. My cough keeps waking me up at night though so Mummy and Daddy are getting very tired! I’ve sicked quite a few NG tubes out too and decorated both Mummy and Daddy, oh and Ella too! I like to spread the love!
Me and Dadda
My eyes are much the same but behind the scenes at Birmingham Children’s Hospital the opthalmologists are arranging for me to have some eye drops made from filtered blood which will hopefully help and I should get these soon. I’m going back to BCH on Friday too so the opthalmologist can have a look at my eyes when I’m asleep and he might block my tear ducts to help my eyes keep moisture.
Mummy and Daddy are watching me like a hawk and Mummy and Dr Hartley have been speaking and emailing lots about me. I want to stay at home but if my skin gets worse I’ll have to go back and that might mean spending another Christmas in hospital and that’s not what me or my sister want.
Me and my lovely sister
I need to go have a nap now.
The good news is I’m finally home! Well I say home but I’m still in hospital alot! Last week I spent 4 days in hospital so I’m spending lots of time on the motorway which means lots of sleeping for me…not that I need am excuse to sleep!
Playing with my sister
My eyes are still really sore and both my corneas are very scratched so I’m having 4 types of eye drops and ointments. In the daytime my mean Mummy and Daddy have to prise my eyes open every 2 hours to put drops in but they do tell me it’s to help me.
My sore eyes mean I’m still very grumpy alot of the time. My favourite position is having cuddles so I can hide from the light. Because my eyes are so sore I want to sleep lots but Mummy and Daddy are trying to keep me awake so I sleep properly at night.
I’m back in Rotherham two days a week for my ECP and Dr Taylor and Dr Alfred are pleased to see how well my skin looks as they’d seen the nasty photos from Birmingham from when I was really poorly.
Enjoying a cuddle up in Rotherham with Daddy
Mummy and Daddy took me to a special corneal clinic last week last week and the specialists had a couple of ideas of how to help my eyes so we’re just waiting to see what the plan is.
The main thing now is just staying free from infection as my immune system is still very very weak and I don’t want to be back in hospital again!
That’s all for now anyway…its sleepy time!