We were told today that William is too unstable to go home for the time being. The team don't think that he is actually clearing his bugs that are escaping from his gut. Sometimes we get one in a blood test, sometimes another and occasionally none but they think they are all there as his intestines are literally leaking their contents into the blood. We have tried every available method to control this. William was allergic to the only one that worked! Although we remain hopeful that we can get some normality with Hope and Ellie soon, there is a strong chance that he will not become well enough to go home until he has had his transplant.
The lovely Emily has written about the issue of children's transplantation and organ donation on her blog and is encouraging debate (you have to look to the post below her lovely wedding photos from this time last year - those smiles show what a transplant can do to a family :-) ) I would be interested in your thoughts. If you were faced with the unthinkable, would you give your child's organs for transplant? What about if it were your child who needed a transplant? The lovely Pauline, from the Donor Family Network told me how positive it can be for people to donate their loved one's organs - to be able to say yes to someone like us. That is what we are waiting for, someone to say yes.
This is what I posted in respsone to Em'sblog:
I think this is something that needs a lot of awareness to be raised. If families could bear to think of the unthinkable for a minute and prepare their thoughts and ideas then it would be easier for them if that ever happened to them.
I really struggle with the notion that I am waiting for someone elses child to die in such a tragic and sudden way but there are two children in this hospital at the moment, both of whom desperately need their transplant. At every ward round we are being told by doctors that we are at the end of the road. All options are exhausted. There is a high chance that William will never now be stable enough to go home until he has had his transplant. We were told that only 25 children donate organs on average each year. We were also told that there are about 3 'events' a year that could lead to William's transplant and, of course, he may not be the only child waiting for the same organ on that same day.
My thanks go to Ubaids' lovely parents for being brave enough to highlight this on our behalf.