James' Transplant
James on 3rd Birtday 21-08-04
On 11th January at 01:00am we got the call from the transplant team in Birmingham a liver and small bowel suitable for James had become available. We had for once got to bed early as we had nurse from the Chester Community Support team overnight to look after James, but this was one time we were very pleased to have been woken for..... we were ecstatic, concerned and sorrowful as another family somewhere had lost their 3 yr old child to give James a chance of life.
When James' "TPN" was attached earlier on his feed had to be put in its backpack to keep it out of the light, for the first time since being at home we had run out of plastic UV protecting bags. So at least in doing that we were ready to go. The bags had been packed for months, so we had forgotten what was in them but we could survive and our main concern was to get James to Birmingham Children's Hospital (BCH).
We arrived at the hospital around 3:30am, James in good spirits, parents a pack of nerves.
During the pre-op check ups he had to have a chest X-ray at 5:00am, atfer which he said "that was fun" and wanted to play on the Thomas seating rather than get some sleep.
James spent the morning tickling his mum and was on top form, until he arrived at the theatre for his anaesthetic , the sight of strange people in gowns making him panic....
Now for the wait.............. the liason nurse said the operation could take 12 - 17 hours
So Mum and Dad were all nerves and exhausted, we had to make some calls and get Coffee and Tea and wait some more..............
We had been waiting since September '04 when James was diagnosed with liver disease and given 3-6 months to live.
Christmas was a milestone for us all and James had enjoyed himself appearing on GMTV on one day, then on Christmas Eve having a Tractor Ride with Santa and James' friends, all arranged without any of us knowing and a surprise to us all; then Father Christmas arrived with presents galore, topped off with snow on Boxing day.
However James, although enjoying himself, was not well having to have blood transfusions on the Wednesday before and the Tuesday after Christmas, even weekly transfusions did not seem to be keeping his red cell count up enough anymore.
Dr Beath, James' consultant at BCH, later let us know that she thought that he would not have made it much longer "days.... at best", even though she had arranged a clinic visit in February.........
At 4:00pm the Transplant Surgeon called to say that his work was done and all had gone well, but that there was still a wait as others had to tidy up after him (stitching etc).
At 5:00pm we were informed he was out other theatre and would be going up to Intensive Care ("ITU")...... but we still had to wait
Professor Miller and his team saw us at 6pm to let us know the operation had gone very well and James' other main organs were performing and he had not lost too much of his own blood in the process (although needing 6 pints of new blood).
Finally at 8pm we were able to see James on "ITU", one wait over, another to begin.
See Week 1 Update
