Monday, November 24, 2008

One Step at a Time

Taking things one step at a time is something I have never been very good at doing. I always want to know what is going to happen next and when and how. Today, I am learning that a recovery from a transplant is one of those situations where you have no choice but to take things as they come. No-one can predict what is around the corner. It is a lot like how things were when the children were premature babies in the neonatal unit. Things go well, then they may take a little step back.

William is OK and all is going very well. His temperature has been down today, much to my relief. He had his first stoma biopsy today. The doctor puts a thin tube with something I am going to call the grabber at the end of it and pulls out a sample of tissue. This will be done twice a week to begin with to monitor for any signs of rejection. If there are any, they will move to an aggressive treatment. So far so good, Williams biopsy was normal today!

We have had some minor blips. William's tacrilimous (the main anti rejection drug) levels have been too low so he has been put on intravenous (IV) 'tac' for a while until his gut is ready to absorb it all. This is a slow continous infusion of 1 ml per hour. William's feed is up to 10 mls per hour. The great news is that there is still no sugar in his stoma output so he is absorbing. However, his stoma output is, apparently, too high. To me, it is great at around 400 yesterday (a bit more today) where as we were getting 2 litres from his old bowel! The surgeon wants his output to be a closer match to the feed going in, only 120 mls yesterday. The 'high' output has also led to some of our old problems of low potassium levels and dehydration so Wills is not yet ready to shed any of his 4 IV pumps and 4 IV syringe drivers just yet. He is in a proper tangle with it all. Every now and then, his stoma stops working for a while (there is a medical term for this but I have forgotten it) causing painful spasms. This is something they have seen before and will pass but his feed has to be stopped while it is happening. It may be that he goes back to 5 mls per hour tomorrow. We have been told to expect two steps forward and one back. As long as we keep going in a forward direction overall, I will be happy.

My thoughts have been with our donor family today. I am keen to learn more about William's donor and write and initial thank-you. It is beginning to feel like we have received this amazing gift and I can't really fully enjoy it until I have said thank-you to the people who gave it to us. I imagine they will be preparing for the funeral this week and I want them to know we are thinking of them. This is the side I still find incredibly emotional and get very teary whenever I think about it. I have a feeling a lot of my emotions from the past week, and before that, will pour out while I am talking to the donor coordinator, hopefully tomorrow. Paul has now gone off on the tour to Norwich and I think it is all beginning to sink in. The last few days have been so surreal that I almost think I am dreaming sometimes.

Thanks Rebecca and Rebecca for asking about sending things to William. He loves getting post so will definately appreciate it. The address is:

Ward 8
Birmingham Children's Hospital
Steelhouse Lane
B4 6NH

Now where was I with our story...ah yes..

So, there I was, standing in the operating suite being told that we had a donor for William. That is one of those scenes I am never going to forget. It was so strange. We had only been having a light hearted discussion about this scenario a couple of hours previously and here it was happening. If I didn't know better I would have thought it was a set up. I laughed, cried, gasped. I just didn't know what to say. William had been so unwell that afternoon and I couldn't believe what was happening. I didn't want to believe he would get his transplant. I was so worried we would get there and be told he wasn't well enough to go through with it. The team were not going to discuss whether to wake William up to go or to leave him unconscious and transfer him in an intensive care ambulance. He had already had two aneasthetics that day and there was some debate over what was safest. To keep him under the second until after the transplant or to wake him and give him a third first thing in the morning.

I left them to their discussion and went back to the ward to sort out the mountains of clutter we had accumulated. My feet were not touching the ground. I didn't know what I was doing. I ran into the ward. The nurses already knew as there had been a lot of discussion before I was even told. Everyone was excited and nurses from the other ward, where we had been during our earlier period of isolation, kept coming over to wish us luck. I shouted to the other long term parents I had been sharing my life with over the last few weeks and they came running with hugs and offers to help. I don't know what I would have done without ML and J. My head was in shreds and I had no idea what I was doing. I just wanted to get to Birmingham and find out what was going to happen. I also wanted to see William. It seemed so strange that all this was going on and he was alseep upstairs. ML and J helped me pack a few bits on top of the pre-packed transplant bag. I was going to take it all but was told to only take essentials as they wanted space on the ambulance in case of any emergencies. As a result, there are lots of things we really could do with among the clobber retrieved by Paul's parents.

It seemed like ages before I was called back up to William in recovery. They had decided to wake him but we were going in an emergency ambulance with a nurse and anaethetist, just in case. The ambulance crew turned up shortly after me. I didn't realise we were going from there so ran down ot get my stuff - ML and J were life savers again, helping me up with it all. When we got back, the crew had gone. They had been pulled from our job and another crew were due in 5 minutes. That turned out to be nearer an hour! I was worried as I knew the op was scheduled for 7 am and time was passing fast. I really wanted to get going. The surgeons who were about to operate on William stood by with support. Finally, the crew arrived and we loaded up.

I was told about the call just after 9pm and we left after midnight. We needed to get to Birmingham ASAP so the blues and twos were used. There was a traffic jam on the M1 and it was exicting seeing traffic move to the side to let us through. One of our favourite nurses which made me feel much better about it all. The journey seemed to take ages. William's heat rate was high and he was a bit warm. I was still so worried that they would not think him well enough for transplant. As I said at the beginning of today's blog. I hate not knowing what is coming, especially when there was so, so much at stake.


Rebecca said...

Fascinating reading Sarah hunny, and I'm glad that I already know the outcome, as otherwise I'd be on tenterhooks!

I've posted off a card today for William, and I've arranged for a little something to be delivered to the ward for him, so fingers crossed he gets that!

Lots of hugs,

Becky xxx

Rebecca said...

Yay, am very glad that William's balloon arrived and that he likes it! The jelly beans were a free gift with the balloon, and I wasn't sure whether it was appropriate to send them, but it didn't give me an option not to send them, so I just hoped for the best and thought if he couldn't have them, maybe he would share them with you!

Wow, he might be able to eat them in as little as a week! That's amazing!!

The inhalers are helping Dylan's cough, it's still a wet cough when he coughs, but it's not so frequent.

Looking forward to hearing how William is doing today.


Becky xxx

Tinypoppet said...

You? Rushing ahead of yourself?! Phoning me to ask what you can do publicity wise to help other children who are still waiting?!?!


Sarah you are amazing but please remember you are not very careful with making yourself slow down and focus on just you and your family. We are all here for you and rooting for you and you so so deserve this chance and have nothing to prove. I cannot wait to hear about the progress - thinking of you lots and it was wonderful to speak to you earlier xxxx

ps - I had absorbtion issues for a while (with no bowel tx!) and was on IV immunos so I don't think this is unusual. big hug xx

Anonymous said...

Wow what a read!! I do hope that you can keep on successfully juggling all the things that you do - the way that you do. Take it easy though. Lots of love to Wills!
Yasmin x

Gemma said...

I'm so glad William got his transplant, heres to a speedy recovery and positive future xx

SherryB said...

I love reading the story Sarah - do take good care of yourself. We're all rooting for you and Wills on Fetch.