Fighting Back

Hi guys

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….


Doing clapping

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.