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.
After a good week last week and only needing a little bit of oxygen at night Daddy and Ella came up to see me last Friday after school. I was really pleased to see them!
My big sis seeing the Christmas bull!
On Saturday morning Mummy and Daddy found out I’d managed without oxygen so Dr Abel Hady said I could go home for the weekend! It was brilliant! When I got home I had a lovely big sleep while Mummy, Daddy and Ella made the house all Christmassy! Then on Sunday Nanny and Grandad came round and Mummy cooked a big roast lamb dinner. I just played on my mat though!
On Monday morning Daddy had to bring me back to BCH for my ECP. The eye doctors had had another look at my eyes before the weekend and decided they weren’t improving quick enough and Mummy and Daddy agreed I should have an amniotic membrane on both my eyes on Tuesday. This would act like a bandage and cover the scratches and help my eyes heal.
All ready for theatre
On Tuesday I went to theatre but unfortunately Mr Paruleker found I had a big perforation in my right cornea so could only put the membrane on my left eye. He filled the hole in theatre but when the consultant checked my eye on Wednesday fluid was still leaking through into my eye and they decided I need a cornea transplant and fast or I would lose my eye. Mummy and Daddy were really upset and Ella was too as this would probably mean I couldn’t be home for Christmas.
Luckily Professor Shah was in BCH yesterday who is a cornea expert and there was a spare cornea so at 6pm last night I went to theatre! At the same time Mummy packed at home and Daddy came home and now I have Mummy, Daddy and Ella with me! It means Ella’s missed two days of school but she doesn’t mind as she gets to join in the carol concert in the hospital chapel this afternoon.
In the meantime I’m having ECP and playing happily even though I look like a pirate!
Ah me hearties!
That’s all for now. Whether I get home for Christmas remains to be seen but I’ll keep smiling.
I’m back home…on good old Ward 8 at Birmingham anyway.
Yep I'm a Superman.... a lazy one
I finally got off the ventilator last Wednesday in Sheffield so that made it a bit easier to get back to BCH and last Thursday me and Daddy managed to get transferred. I was glad to get back and after a week with just Daddy I was really happy to see Mummy and Ella at the weekend. Now its just me and Mummy so I’m getting a bit bored of her now and want to get home and see Daddy and silly Ella!
I’ve done well this week and quickly got off the oxygen, but overnight I’ve been needing the tiniest trickle of oxygen and that’s what’s keeping me here! Mummy keeps telling me to behave at night but each morning she’s found out I’ve had oxygen.
Today Tracy is coming down from Rotherham so I can have ECP which is good as I missed out last week because I was in Sheffield. My skin looks good though and is almost completely better.
Being back at Birmingham means I can have my special blood serum eyedrops and I’ve been opening my eyes a bit more this week! The opthalmologists have been to see me and there seems a tiny improvement.
Me happy after having my anaesthetic eyedrops so the opthalmologists could examine my eyes
I really want to go home now and for us to be altogether again! I really really don’t want to spend another Christmas in hospital and nor do Mummy, Daddy or Ella.