This Is Me...

First of all a bit about me, I have severe global development delay, gastro oesophageal reflux, auto immune haemolytic anaemia, macrocephaly, abdominal distension, epilepsy, recurrent chest infections, TPN dependant and intestinal failure. I have an unsafe swallow which causes me to aspirate which is why i haven't fed orally since i was 7 months old. I have a broviac line, gastrostomy, jejunostomy, and a ileostomy. I am unable to walk and talk but I can get across what I want in my own way.
Despite my medical problems I am a very happy, cheeky little boy. I love to play with Lego, wooden puzzles and rip tags up off new clothes!!
In November 2011 my bowel started to deteriorate more which then led to an emergency operation Easter weekend April 2012 after being rushed to A&E where I started to loose consciousness. After the operation things never got better. I am now unable to take any milk feed at all as my bowel can no longer tolerate it. This has left me reliant on TPN going straight into my main artery and giving me all my nutrition via a drip.
Since April I have undergone quite a few more emergency operations for obstructions and a complete twist in my bowel. We had high hopes and a lot riding on the operation for my stoma (ileostomy) to make things better, but still it wasn't a success.
We have been told that a small bowel transplant is the only way I will get off the TPN and back to milk feeds again but because of my neurological problems, statistics and overall health my chances of a better quality of life is to continue on TPN feeding for as long as I can. Only problem is, I already have some degree of liver damage from not being able to feed and because I can't tolerate time off TPN we have been told that my liver may deteriorate and then it will be a small bowel and liver transplant I'd need.
Currently, my mummy is learning all cares for my central line, pumps, ivs and fluid charts so that I can be at home with my sisters. I just need to be stable before they'll consider a discharge.

My blog is to share my journey through the chapters of my life, through the tough times and the happy.