All Change! New Baby.....

This is NOT going to be the upbeat post I thought it was! However maybe recounting the miracle might put things into perspective?!

Molly finally got her transplant! I can't believe it, as these last couple of days we are having a bit of a nightmare again, but I digress and will start from the beginning.

I got the call Monday 27th June when I was at Tescos, halfway round with a full trolley! We dashed back home and waited for an hour for the ambulance. So I called the co-ordinators, who were somewhat horrified that we were still in Sussex! I asked if the team had gone out yet and was the liver viable. The answer came: Yes! Its here and Amy is already out of theatre...

(Now I must explain about Amy of course! Amy and Molly are the same blood group and although a fair few years apart in age, birthdays are only a day apart! We always wanted Amy to have a big lobe and Molly to have a small one. So the fact that Amy was already out of theatre..... )

Well the ambulance came after some heavy verbal artillery from Kings and we were blue lighted up to London (it was an ambulance car - cool!). That is most definitely the only way to travel through London thats for sure! Throughly enjoyed the ride. Molly slept through all the sirens etc until we got to the hospital. Then a fire engine went passed and she woke up!

We were in theatre within the hour - amazing! Great actually - we didn't have that awful wait to see if the liver was viable and no hanging around on the ward waiting to go down - it was all whoosh bang go go go!! Once we got over the initial minute of emotion at letting her go into theatre, there was a big AH! from both of us. The relief of a liver finally being suitable and no more watching our child get sicker day by day right in front of our eyes - I can't tell you how relieved we were unless you have a sick child yourself. Its amazing.

And then 6 hours later (yes only 6!) we had her back again. They had a bit of trouble getting the old liver out - lots of adhesions etc. But once it was out it was all plain sailing. As of to date, the graft (liver) itself has been consistently good. One less thing to worry about! It was a good match for her.

24 hours later, Molly was back on the general ward. She took her vent out herself so they had to hurry things along somewhat! We did have a few issues with pain relief, but it got sorted in the end.

2 weeks later and they were talking about discharging us! Now that WAS scary - bit too soon. What they did do was discharge us to a flat for a few days. (Explain: The Rhys Daniels trust was set up by the parents of two children with health problems. The trust buys flats nearby to the hospitals so enable families to stay together. It was brilliant and a complete lifeline.)

Then the trouble started! Nothing too major, we have been lucky. But Molly did get a load of fluid - a bile leak for those in the know. This is due to Moll having a "cut down" liver. It has a raw edge that has to heal and it just took its time! Poor baby had 500ml (about a pint) in there at one point, all infected. So 3 drains later..... and a little infection, and a tummy bug...

We came home on Friday after spending a few days at the flats. She is AMAZING. Skinny little thing at the moment as she is still having bad diarrheoa and is occasionally sick. But she is running, climbing, laughing - its wonderful to see.

We are going up tomorrow for a check up and an ultrasound to check for fluid. The main trouble we are having is that she is not eating or drinking hardly anything (although that has been slightly better today) and has lost loads of weight. She is also having TREMENDOUS tantrums. Now that could be seen as a good thing. Indeed when it started we were pleased she had the confidence and energy to throw her weight around a little. Unfortunately these have built to around 6 today, lasting anywhere between 10 mins and 1 hour. They come on fast and she really gets incredibly upset - almost to the point of making her sick. We are wondering if its the steroids.

So tomorrow hopefully answers some questions - or poses more. And yes, this has put things in perspective a little. She is so much better health wise - its just that we are exhausted from worry and lack of sleep. (No, she isn't sleeping yet!).

We are so very glad our little girl is on the mend but god, I hope she starts eating and drinking soon. She WAS eating and drinking LOADS after the op - I couldn't stop her! Its just tailed off slowly but surely over the last 2 weeks. She was looking chubby and full of fun - now she is tired and angry. Not what we want for her. But she no longer has Biliary Atresia!!! And no longer has a huge tummy. We don't have to worry about bleeds or dehydration (well, not as much). She is fantastic and I am in total awe of the surgeons. Thank you all.

p.s. did I mention the bombs???? I am sure you are all aware London was bombed - Kings College was somewhat in the middle of the trouble area - suspects everywhere and the man that was shot (was it 5 or 8 times in the end?), well that was a mile down the road. Lots of sirens/raids/explosions that just weren't on the news. Scary stuff.