Stuck In A Rut

Hi everyone

It’s a while since I’ve done an update so I’ve given Oliver the week off.

I’d hoped this blog would be a bit more positive than the last, but sadly that’s not the case.  Over the past week Oliver’s stoma losses continued to stay high,  hovering around one litre a day, four times more than usual and the opthalmologists had hoped for better results by now too.


Oliver having a post theatre snuggle

On Wednesday Oliver had an endoscopy and ileoscopy in the hope that further biopsies would explain the high losses but these were inconclusive and didn’t seem typical of rejection.   The dietician had tweaked his feed too in the hope that reducing the carbohydrates might help and Oliver also had a one off dose of IV steroids but these just made him stroppy and hungry.  Yep, hungry!  The only good thing to have come out of the last week is that Oliver’s shown an interest in food for the first time which has been a joy and something I thought I’d never see.


Oliver getting messy with yoghurt

By the end of the week Oliver’s losses had been rising and Oliver had become increasingly unsettled with it.  He was so tired yet he seemed unable to sleep for more than ten minutes, he didn’t want to lie down,  and didn’t want to play.  11 hours of sitting in the semi dark in a tiny cubicle with a whiney boy every day is not much fun so by Saturday I was more than happy to see Paul! 

I decided after a lousy Christmas and a rough week of not being together we’d go out for a nice meal…I even washed my hair specially!  
After a few days at home on school run duty Paul was shocked to see how much weight Oliver had lost. Oliver went steadily downhill over the day, and although we managed an afternoon off the ward, Oliver was withdrawn and becoming dehydrated.   Suffice to say it ended up as a late takeaway of fish and chips on our one night together!

So that brings us up to date. We have no real idea of what’s wrong which is just as frustrating for the consultants.  It could be rejection or a viral infection,  but they can’t tell.  As of today Oliver’s feeds have been stopped and he’s started PN, the IV nutrition he had as a baby that kept him alive but also ruined his old liver!  It’s something we never thought we’d see again,  but then we never envisaged any of the past two years would happen and he can’t continue to lose weight.


My boy and the dreaded pink PN bags

This Wednesday Oliver will be having his endoscopy and ileoscopy repeated which will hopefully show something and on Friday he’ll be in theatre again to have amniotic membrane on both eyes to try and help them heal quicker. 
Remaining hopeful and positive is something we’re both struggling with, especially when you see older children still struggling or sadly not making it.  All we want is to be back home to regain a sense of normality with our little family all together.



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.