Sunday, November 23, 2008

A new roller coaster ride

It is all really exciting - William's new bowel is absorbing!!!! His stool output was tested for sugar and there is none there so Wills had absorbed all the diorylyte. His stoma output is fine and looks normal, not like the coloured water he used to loose by the litre load. All is going very well. He is now on a special feed which he will be on for he next 3 months. He is on this 5 mls per hour and is also on 10 mls per hour of water which he drinks through sponges or straws. It is wonderful to see him tolerating feeds. The feed will now be gradually increased and his IV fluids weaned down.

We do have a few little worries though. William's blood pressure is a bit high but he is now on medication for that and it is settling. He needed a bit of oxygen this morning but it looks like it wa due to being a bit overloaded with fluid. He also had medication for that with good effect. The main concern is that he has had a highish temperature all day, around 38 which is not too bad but could be signalling the beginning of infection or rejection. It is unlikely rejection because it is a bit early for that and his bowel is performing so well. However, 80% of children who have small bowel transplants do experience some level of acute rejection so we are no means home and dry there. Time will tell if it develops into anything and, although he is doing so so well, I will remain a bit anxious until his temperature settles. The liver consultant on this week does not let you say they are doing well because you never know what is around the corner. We are learning to ride a whole new rollercoaster now but, so far, the ride has been pretty smooth. William did not arrive in the best state for a transplant, as you will see if you read on, and a bit of infection is probably to be expected.

William is still a bit upset by it all and is still speaking in 'gruntish'. It is a lot to take in and I think he will feel a lot better when he is off the morphine. We now have our cubicle so I am making it cosy for us. We have a bathroom which is already taken over with dripping washing. The cubicle walls are covered with a lovely mural of dinosours. It is really lovely, which is just as well as we may be here for some weeks. We are settling into our 'home' and getting to know the nurses and some of the other long term families. We came back to the ward on Friday afternoon so have settled in during the weekend. Tomorrow, we will begin to learn the daily and weekly routine here and get into one for ourselves. At the moment, William's sleep pattern is totally out of whack. He tends to dose here and there and day and night is the same.

Now, to get back to that cliff hanger from yesterday... Oh, and just before I do. My mobile phone is not getting reception in our room. As William is in isolation, I will be there most of the time. I will get texts and messages when I step out to get meals and make cups of tea etc but won't get them straight away.

I got back to the ward to find the junior doctor on the phone. I asked what was going on and she said the consultant was coming to see me. I am not at all good at sitting and waiting when I know something is going on so I hung around to try and find out. The registrar arrived and started looking at the x-ray. I asked if I could see too and he showed me what was clearly quite abnormal though I had no idea what they could see in it. He told me that William's abdominal cavity was full of air, indicating that his gut was perforated somewhere. It was a surgical emergency and the surgical registrar would be down soon. Next, our consultant came and explained it all to me. William's gut had most likely been torn when they pulled out the back of the old gastrostomy. The surgical registrar came and said he was not sure if William would need an immediate operation. He would be back in a couple of hours with the consultant, the same one who dilated William's illeostomy earlier in the day as well as forming it back in January. The anaesthetist then came to discuss pain relief for William through the night and start him on morphine as he was in a lot of discomfprt. He looked terrible and I was a bit dismayed to hear her say there were no immediate plans for surgery. William's TPN was stopped and he was put on fluids. He was already on sufficient antibiotics because of his line infection.

About an hour later, the surgeon came and had a feel up William's illeostomy. He found it had come away from the abdominal cavity and was torn. William had not had any illeostomy losses since the scope and usually looses a couple of litres (well he did, not any more!). Some of this was draining from his stomach and jejenal tube but a lot could be escaping into his abdominal cavity. He explained that William needed an urgent operation which would take place as soon as they were ready in theatre. He was to have his stoma revised - about 5 cm of bowel removed and a new stoma formed. It was a big op of about 3-4 hours and he would have to go to the High Dependency Unit afterwards.

It suddenly occured to me that he could not be called for transplant in the middle of all this. I rushed out to ask about it and found the gastroenterology consultant talking to the surgeon. He gastro consultant said Wills would have to be suspended from the transplant list for a couple of days but the surgeon was keen for him to remain on and said he would have no concerns about him going for transplant the next day. If he were called during the procedure, he would make good and send him on his way. I still felt William was in no fit state for a transplant but, as the gastro consultant said 'We will still be waiting in 6 months time!' - that has got to go down as one of the famous last words of my lifetime and I can't wait to tease him about it!

I took William up to theatre and to the anaesthetist who had earlier come to sort out pain relief. She had gone home and was on call, luckily she had enough time for dinner before being called back in for William's op. As it was now evening, we were up in the main theatres, rather than the paediatric one, so we had to take him up in his cot. There were loads of papers and magazines behind it so I decided to have a big sort out before settling down to eat some tea. I had only just got going when a nurse came in and told me that the surgical registrar had called to say they want me up in theatre. William was OK but they need to talk to me. I thought they may want to ask me to sign consent for something else they had discovered needed doing or perhaps the tear was not as bad as they thought and we could get away without the op. As we got out of the lift, the registrar was walking towards us - in scrubs but not in theatre! That was when I got the BIG news. They had put him to sleep but had not started the op...because they had received a call from Birmingham to say there was the potential for William to have his transplant. They were in discussion with the surgeon at Birmingham about what to do about it and they felt I should be involved. When I got into the theatre suite, I was met by the consultant surgeon who told me they had decided to send William up to Birmingham and take it from there.


Vikki said...

WOW, talk about timing!

Rebecca said...

Wow, Sarah! They say truth is stranger than fiction, and it really is in this case, there is no way anyone could think that up for a book/film!

You really have been on a rollercoaster, and you must be exhausted! What a lot to take in! I'm having to re-read things because things are moving too fast for me to take in, and I'm only reading it, you lived it!

I'm so so glad to hear that William's bowel is absorbing, and that he's mostly enjoying having his meds orally!

Hope he can feel more comfortable very soon!

I'd like to send him something, but I'm not sure what he's allowed after a transplant and being in isolation. Can he have cards? Balloons?


Becky xxxxx

Tinypoppet said...

oh my god! I cannot believe this! Your head must have been absolutely spinning....

Thinking of you loads


diddyangel said...

Oh my god sarah i can't belive this talk about do it in style!!!! Can't wait to hear more. I know it must be hard but you must try and rest xxxxx

Jac said...

Just found your blog via Emily - I remember you from CF forum.

I can't believe this story - how amazing!!! It really does sound like a movie. I'm keeping everything crossed it has a Hollywood ending:-)
Jac x

Becky said...

Wow - I agree with an earlier comment, you couldn't write something like this if you tried! I've sent a card and a little present to the hospital today - I hope it's alright for him to have in isolation.

Love Becky Paulinyi xxx

Holly said...

What an amazing story!

Still thinking of you all lots x

suzie said...

Flipping heck Sarah, what a hectic and emotional time that must have been.

You are amazing!

Great big (((HUG))) lots of love and many stay strong vibes from me to you.

Praying also that William has a speedy recovery.