Running low on positivity

It's hard to stay positive all the time. Today I've felt quite sad. It's my niece's 7th birthday and she was having a lovely party to celebrate. Erin should have been there in a pretty dress with a big smile on her face. Instead she has spent hours on iv infusions, had numerous needle sticks for blood and is now about to be woken for another cannula. Another cannula..... the last one lasted only 12 hours. They have already had two unsuccessful attempts tonight and we had to stop the Dr trying her scalp veins.

They are NOT using her scalp veins.

She is on the emergency list for tomorrow afternoon so we are hoping (more than ever) she will get a slot so they can put in a central line. So tomorrow she'll need to be fasted (aka starved) from 6am.

There were a few nice periods in the day. We are no longer in quarantine (yippee) so we were on 'fish watch' for half an hour. She enjoyed meeting some new faces on the ward, especially our neighbour, a teeny weeny 3 month old boy who had a liver transplant just before Christmas, he is doing very well and is going home on Tuesday! We also escaped for a couple of hours to Eckersley house then a walk round the hospital with Marie.

We heard a fellow BA baby in America has had the gift of transplant over the weekend. He is doing very well at the moment and we are still thinking of him and his family. His story has been so similar to Erin's so far it has given us hope that one could happen at anytime for us but who knows, it may take 6 months on the list.

We still have the hope of a successful living donor transplant that will shorten the wait. I'm not going to mention any details for fear of tempting fate, but there will be crucial tests this week that will give us a better idea. If successful (cross all fingers and toes please) the maximum wait could be between 6-16 weeks to the planned date. That still seems a long time at the moment but it would give us hope and something to work towards. We will probably stay here for at least a month after transplant so if we have to wait 4 months we could still be here in the summer........