Tuesday, 9 December 2014

Day Sixty

1. Positive Spin

I’ll always remember the conversation I had with William’s gastroenterology consultant when he was first diagnosed with intestinal failure back in October 2005, when he was fifteen months old. The first thing I remember is asking if he’d be home for Christmas and having it explained to me in no uncertain terms that he had intestinal failure, organ failure and no we wouldn’t be home for Christmas as there was a lot of tests still do be done and things needed to stabilise but we would start working to get him home on TPN in the new year. The second thing I’ll always remember is the doctor saying that he clearly had not been able to absorb things in his bowel properly since he was born. He had been feeding literally every five minutes as a baby, which was exhausting and very draining on the family, and when we started weaning we dubbed him the baby food factory as it all just seemed to come out the other end. The consultant said this had been missed because his lack of absorption and gut motility problems had caused him severe reflux, the silent type where stomach contents reflux into the lungs, resulting in damage severe enough to make him dependent on oxygen and making everyone think lung disease was his primary diagnosis. He was explaining that this had in fact been due to his bowel and it had been a missed diagnosis. I told him I was pleased about this because, had this been diagnosed from the start, sure it would have meant we could have done the operation to stop the reflux and protect his lungs earlier but he would have been put on TPN as a tiny premature baby. I knew from the other babies on the ward that starting TPN as a tiny little preterm baby would have very quickly resulted in severe liver disease (TPN has improved a lot since then and is much kinder on the liver now). The doctor said to me; “that is one way of putting a positive spin on it!” But I really meant it, I was genuinely pleased this had been missed. Wills may have had to endure several severe lung infections, endless courses of IV antibiotics and oxygen tubes 24/7 but during this time his liver had matured and it could now cope better with TPN.

Again today, Wills has spent the afternoon in a bed made up on the sofa and was asleep by 6pm and has had over two litres of stoma output. This has clearly become his new norm and we will now have to adapt our lives around his need to take things in small chunks with plenty of rest in between. Once again, I’m going to put my positive spin on this situation. Ever since we decided to go for this re-transplant my mind has been wondering; have we made the right decision? Is the timing of this right? Could Wills have carried on as he was on the TPN for a long while and what if things go wrong? Over the last few weeks I have been more and more sure we totally made the right decision. This week, I know it is the only possible decision. The timing is right. If the call came tonight and things didn’t go according to plan, I would be able to rest assured that we did the right thing. Of course,we are positive about the outcomes and, when the call comes, will only focus on being so.

Are we nearly there yet?

This is a poem I wrote and shared a draft version some weeks ago. I've tidied it up a bit. 

Are we nearly there yet?
I’ve no idea my son.
But you’re the driver mummy!
Not now my little one.

How much longer is it?
I haven’t got a clue.
But you’re the one who’s taking me!
If only that were true.

Do you know just where we’re going?
I do, but not the way.
We’re lost then?
No, not lost my child
We will get there, one day.

3. The beginning of something.

This is something I penned earlier. When it comes to writing about romance I tend to write about break ups rather than the falling in love stage, other than one song which is about falling in love and I'll share with you tomorrow. I'm not sure if this little doodle below is the beginning of a poem or a song.... or if this is it...

Each second takes me a year away from the memories
And time is passing quickly
Each step takes me a mile away from you
And I am running fast

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