Home Sweet Home

 
 

We are home and William is finally enjoying his new garden. He can't wait to get out there as soon as he is off his TPN. I must admit to enjoying simple things like washing his sheets and Hope and Ellie's uniforms and haning them out in out lovely new garden on such a lovely sunny day (although rather cold!).

We are settling down and getting used to the practical challenges, such as William's illeostomy that drains huge amounts every time he moves, coughs, sneezes, laughs... We now know that his bowel really doesn't move at all. We also know that William secretes enormous amounts of fluid and salts though his gut. All this pools in his distended loops and floods out when he moves. This can result in some very messy situations if the bag fails. We have him attached to a urine drainage system over night and when he is in his chair but it is tricky when he is running around. He is very patient though, not least because he hates having his bag changed when it leaks. The illeostomy has certainly helped decompress his gut but he is still very distended and often uncomfortable. His x-rays still show obstruction - in William's case due to "pseudo-obstruction", meaning obstruction due to gut motility failure rather than a mechanical blockage. They are still awaiting some neurology tests to see if he is suitable for transplant assessment. It is highly likely we will find ourselves back at Birmingham for assessment at some stage. We also face some tricky decisions as to whether we opt for painful surgery to correct his feet deformities or decide that we let things be, resulting in increasing disability and potential wheelchair dependence. We will face all this step by step over the coming months but, for now, we are home and enjoying being together. We are getting festive too. For us, it is Christmas Day a week on Sunday!