An exhausting day!

Our trip to Kings College Hospital today turned out to be a totally exhausting experience!!! It was a horrible place to get to involving train changes with huge staircases and no lifts! I had to carry William, the pushchair, his pump and bags up so many stairs I could have cried by the end of it all. People did help out a couple of times but on one huge long staircase at Denmark Hill there was a girl behind me having to wait (this was a narrower one with no passing space) while I paused and got my breath back and rearranged William and never once offered to help. On the way home I was desperate for a coffee and stood at the top of the stairs with William and my coffee and asked the next person who passed to carry my coffee down. It was such a long day.

William's ultrasound showed that his liver is enlarged and fatty - but we knew that anyway. They took loads of bloods (26mls worth so I dread to think what his Hb is now!!) and will look at those together with his ultrasound to make sure there is nothing else going on other than the effect of TPN. As long as his liver numbers are OKish and he is doing OK on the TPN, they feel it will be better for him not to go for transplant as it will enable advances to be made in bowel transplants (they are still very new and behing other organs) and the bigger he is when he needs it the more chance he will have to get an organ. However, once it is confirmed that he is definately on TPN until a transplant and no hope for any other cure it will be a fine balance to make between leaving it as long as possible and too long. If we wait until liver failure there is always a chance a donor will come too late whereas if we go too soon his life could have been lengthened by waiting... At least we are not at that stage yet. They explained that infections will speed up liver failure - we have already seen this as his liver gets cross and his liver function tests go a bit off when he has infections and he tends to never completely recover back to where he was before. So, it is even more important that we get to the bottom of his current pattern of repeat chest infections - even if it means a repeat Nissens. They are just checking he hasn't got any other form of liver disease but, otherwise, they will be kept informed by Chelsea and Westminster of how things are progressing and will see him again when (and they did say it is a when) his liver function tests go really bad. Today was really about getting a baseline I guess.

We had planned a day out tomorrow but today was so tiring and with such excitment to come later in the week we are going to pace ourselves (well me really) and have a day in. I am thinking a good old girly film Hope, Ellie and I will enjoy when William is asleep and a huge bowl of popcorn!