Tuesday, September 02, 2008
Yipee!!! We are going home tomorrow!!! We have been here 6 weeks. We were supposed to be here for just a week prior to the transplant assessment. However, we found Wills had a bug in his line when we got here. We went to Birmingham with the same bug and came back with it, and a friend in there too. We have now got the lovely new line and a week of IV antibiotics since the old was came out has cleaned up the bugs floating around William's blood stream. They are still in his gut though and it will only be a matter of time before they have leaked and found their way to a new home in his nice and TPN fed Hickman line. The only 'cure' for this situation is William's transplant and, of course, finding him a suitable organ could take months or even a year. So, desperate times call for desperate measures and we are experimenting. William stops his IV antibiotics tomorrow and will go onto course of 'line locks'. This will be a strong solution of an antibiotic put into his line when his TPN is taken down and left there to clean up any bugs that have decided to creep in. We can only do this for a week as the antibiotic is a treatment one and we don't want to cause any resistent bugs. During the next week, the team here are planning to research a different line lock that has been used in Southampton and Birmingham. This is a different kind of drug and could be used more long term. The trouble is, it has been used mainly in adult renal patients, not children but, as I said, desperate times... We just need to keep William well for as much of the time as possible until he has his transplant.
Talking of the transplant, I spoke too soon in Sunday's blog. Last night was one of the worse 'white nights' ever and today, for some reason, I have jumped out of my skin everytime the phone rang with an unfamiliar or 'witheld' number. I guess there will be days when it is easy to get on with life and forget about the waiting list and days when that is a lot harder to do. There doesn't seem to be any rhyme or reason as to what each day will be.
At least, we will be home together for a while. The girls spent the day up here yesterday and we went for lunch in a pancake restaurant. I have always been intrigued by this place but it is a bit pricey, However, Monday is 'Monday Madness' with all pancakes at £5 each. It was an exciting treat for the girls as it was a novelty and the plates were HUGE. William's favourite treat at the moment is having a bread roll to smell so we got him one on the way. He was very content with it while we were eating. For me, my curiosity was satisfied but it won't be added to my favourite little places for a treat around here. Although, I tried a savoury pancake and the idea of a late Monday breakfast of a sweet pancake and a coffee all on my own sounds worthy of a return visit. I will add that to my 'idle pleasures' list for next time we are back at our Chelsea Pad. Wills is at school on the hospital now so an hour on my own on a Monday morning will not be challenging to find. It is always good to have something to look forward to when we are faced with more time in hospital.