Friday, 17 October 2014

Day Seven

1. Twenty-One Lives

William has been on the transplant waiting list for a week now. In these last seven days 21 people, who were on the list with us last Friday, have died. That’s 21 people who would still be here with their loved ones if more people were signed on the organ donor register, if more people were ready to say yes to organ donation and had told their loved ones of their wishes and if more families knew felt able to say yes to such a difficult decision at an often sudden and always traumatic moment in their lives. That’s 21 people like baby Ubaid. I feel for their families. Waiting so long with that glimmer of Hope and then watching it slowly fade away over time. That was very much what it was like for us with William’s first transplant. It’s a corny cliche but, for us, it was true. His call was the 11th hour. There may well have been no tomorrow, no second chance. I told the story of his transplant at the time here and it really is the stuff of soap operas. If it was on Eastenders or Holby City I’d have said they were being far fetched! I hope we don’t end up with his life pushed right to the precipice like that again this time.

He is deteriorating gradually. From day to day he seems the same but little things happen over time. When you compare him week to week you notice the stream of bile carrying a mixture of food so untouched and undigested you can see exactly what it looked like when he swallowed flows faster and more incessantly though his Ileostomy stoma, his colour is a little bit more translucent and his energy levels and zest for things a little more lack lustre. However, his optimism for this second transplant, his sheer determination to come through and his excitement for a future, once again without tubes, eating everything he wants and in proper portions, not the tiny tasters he is allowed now, stays constant. It is his spirit that keeps me strong. In fact, it is this that led me to signing consent for a re-transplant at all, knowing all the risks involved. They are risks that he knows well too and that makes him all the more brave and incredible.

I’m sure everyone reading this will think to themselves, ‘what an amazing boy. I hope he gets his transplant call soon. He really deserves it!’ Well, guess what! Those 21 people we lost from the transplant list this week were brave and incredible too. They deserved their gifts of life more than anyone but that wasn’t enough to enable them to receive them. We need to do more. I need to do more. Last night, a very dear friend I have made through the transplant community asked me if I could write a very special version of a well known Christmas song - by the end of the night! Well, as you may have gathered, I love to write and I like a challenge so I did it. It was more early morning than night but she had the new lyrics in time for singers to take them into the recording studio today. Today, she and I have been musing and chatting about ideas for a Christmas campaign to encourage more people to say yes to organ donation and prevent some of those 21 deaths a week. I will explain everything on day 15, and there is more than one very special reason why day 15 is the day to tell you about it too.

2.  My 'A'

It was back in July, when I first broached the idea of a second transplant with William. We were sitting on his bed, having just connected his TPN. We had a joint clinic with a consultant from our amazing transplant team at Birmingham Children’s Hospital and our equally fantastic TPN and intestinal failure team at Chelsea and Westminster Hospital. Our Chelsea team had already suggested that, in their opinion,  re-transplant would be soon something we would need to think about and I had a gut feeling it would at least be raised as something to think about down the line the next day. I sat down and talked with William about the way his bowel was working, being back on TPN and having tummy pains and feeling sick and then went on to ask what he would think if, one day, the doctors suggested he could have another new bowel. His answer was amazingly mature and considered. He paused and said;
’Let me think for a while…’  and then immediately asked;
“What would 'my A' think? (his donor). I mean, I don’t want to not have her bowel anymore. Wouldn’t she be sad?”
I explained that, no, I don’t think she would be sad. She wanted to give the gift of life to William and the other people who received her organs when she died and she would want those people to keep on living. I told William she would always be part of him and his life from now would not have been possible if she hadn’t given him his first new tummy and so a new donor would be giving another bowel so he could live longer because of the first gift that she gave. William thought about it for a while and then said;
“If A would want me to have another transplant then I will do it.” He is understandably scared and sometimes says that half of him wants the transplant and half doesn’t, especially when we added in the other organs. I told him that I feel exactly the same. Apart than the understandable fear that leads to mixed feelings about going into something so big and so scary, William has never changed his mind from the moment he decided if it was what his donor wants, someone who has always been so precious to him, then it is what he would do.

The next day, we went to clinic and re-transplant wasn’t just raised, we were told we needed to think about it now and come in for transplant assessment in the coming weeks.I was glad we had had that conversation so he wasn’t shocked. I will always feel moved looking back on that evening and remembering how William thought first about that wonderful person who gave him life and what she would feel, before thinking about the physical pains and gains of a big operation. It’s the way it should be.

3. Something Precious Inside - Chapter 1

Although I have a plan for my novel, time lines and tracker notes I tend to write in random chunks, as episodes come to me. Today, I've started pulling some of it together and have been working on the opening. It still needs some more work but this is a start. What do you think? Would you read on?

“Vanilla latte and a skinny lemon and poppy seed muffin? I think this is a morning  that needs a kick start from a Starbucks run. Jeez Tess, will you take a look at yourself! I think you need a double espresso chaser with that latte. In fact, make that a triple! Have you forgotten we’ve got new kids on the block today? We needs our wits about us this morning! ”

“Of course I haven’t forgotten. I’ve been up stressing about it half the night. He might have been a bit of a geek, but at least we’ve got to know Jeremy and he knows the kids. His heart’s in the right place too. I can see you’re keen to make the right impression on the new team” Gill’s sandy blond hair had a tendency to hang course and frizzy but today, glossy ringlets bounced on her shoulders. She was immaculately made up and wore a blouse that actually looked ironed.

“Uuuurgh!” I groaned, pulling myself off the chair to get some money. “Yeah, I’ll have a latte, thanks. Hold the muffin though. My stomach isn’t going to wake up until at least lunch time.”

“Rough night Hun?”

“Yeah, it wasn’t the best. What about you? How’s Charlie?”

“He’s fine. Quick, where’s the wood?” Gill stretched out and held onto both sides of the doorframe she was standing in.  “Touch wood!”

“Double measures!” I thought. She and Charlie could do with that. They deserved a bit of calm.

Gill and Charlie have been living on this ward for almost forever.  Well, for the last seventeen month at least. It really is home for Charlie. He has never left the hospital. He was born prematurely and had something called nec, meaning all his bowel literally died and rotted away because of an infection. Charlie has had fourteen operations and he’s not even two years old. Most of his bowel has been taken away leaving him with ‘short gut syndrome.’ The end of what is left of it pokes out through his skin into a little bag. Sophie is fascinated by his ileostomy and calls the stuff that comes out of it ‘tummy poo.’ What tickles her the most though are the ‘tummy trumps’ that can be so loud at times you’d be amazed such a little dot could be capably of producing such a bellow. The trouble is, Charlie’s bowel is far too short to absorb the fluid like it should and so he loses litres of watery poo, making the bags fall off all the time and burning his skin. Gill had a horrendous time with him last week because his poor little skin was bleeding all around the stoma and nothing would stick. Then he got an infection in the Hickman Line, the white plastic line that delivers the a special drip straight into his heart to give him his TPN, as special fluid containing all the food and drink he needs.  Line infections are our biggest fear. One minute our children are playing and laughing and, literally, the next they flop down onto the bed, stiff and fitting with rigours, grey faced and terrified. We scream, nurses run and the sickening dual toned sound of emergency alarms screech across the ward. IV antibiotics and fluids are squeezed in frantically and we watch our children gradually relax their bodies and turn pale at last, which is a darn sight better than grey! We fear line infections because they come on so suddenly and make the children so ill but we fear them most because they can kill. Last week, Charlie was lucky again.

“I don’t think Charlie will cause any dramas this week. Sophie’s looking really yellow today Tess.”

I looked around at my Sophie, still asleep in the bed beside me.

At six and a quarter, Sophie is more than three times Charlie’s age but she is a TPN beginner in comparison, having been on it for just two months. One of the complications of being on TPN for a long time is liver disease. Sophie’s liver threw a major strop at the stuff after just one week! Sophie went to school one day feeling a little bit queasy, something we both put down to the fact she had eaten scotch eggs and min chocolate rolls as if they were the last of their kind on the planet at her cousin’s christening the day before. So, I sent her to school expecting her to pick up as the day went on and the indigestion passed. At just past ten, the school called me to say she had been throwing up so violently there was blood in her vomit. By lunch time she was passing blood and looked the colour of the paper, despite running a fever of 40 degrees. Sophie fainted in the GP waiting room and by the time the ambulance arrived she could barely whisper her name. It was a very rare but aggressive virus they said. We were lucky that it only killed her bowel and, perhaps, contributed to the rapid demise of her liver once TPN was started the day after most of her black and deadened bowel was removed. “It was a blessing really,” they said.

“Yeah, her bili hit a thousand yesterday.” Bilirubin, a toxic by product that should only be found in the blood in a measure less than 40, has become the daily yardstick to assess exactly how ‘end stage’ her ‘end stage liver disease’ has become.

“A thousand, jeez.”

“A thousand and seven. More bloods this morning. Even her tears are yellow now.”

“How’s she feeling?”

“I don’t know. Sleepy…grumpy. She had four big nose bleeds last night, that’s why I’m looking and feeling like a zombie.”

“You need that transplant call hun. Maybe this is your week. Oh, I’d love to see the look on Viv’s face if you got the call on their first week! She’d never top that.”

Vivianne. Mum to Alicia, the third ‘long term gastro kid’ on the ward. If you met Vivianne in a ballet school she would be the mother of the child with the perfect bun, immaculate tutu, spotless shoes and the biggest ‘Look at me, I’m a dancer’ bag you could swing over the shoulder of an eight year old. It would go without saying that Alicia would, of course, be the most talented dancer in the school. In fact, would show more promise than anyone has ever seen in the school before - at least in Vivianne’s eyes. Vivianne would be in her element, regaling every mum would would listen with her tales of her daughter, THE ballerina… and every mum who wouldn't listen too. If you agreed with her, she would be your best friend. Here, where there are no ballet exam classifications to brag about, Vivianne has to resort to blood tests and vital signs scores to compare her darling Alicia with the rest of us. Alicia is the weakest, sickest and most complicated child our medical team have to manage and Vivianne seems to thrive whenever she at the centre of any drama.

“Right!” Gill exclaimed, “I’m going for those coffees and I’m getting you a muffin too, you need it. You’re not getting the skinny one either. You’re having a big fat double choc.”

“Fat is what I’ll be sitting around here all day drinking latte’s and eating double choc muffins.”

“There’s nothing on you, look at yourself. You could eat a fair few before you need to worry. Now, get freshen up and get some slap on your face. It’s only an hour or so before ward round…and first impressions count!”

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