Day Forty

1. 19th November 2008

I will never ever forget the 19th November 2008. I can play it like a movie. It was the most traumatic and wonderful day in my life. In the morning, Wills went down to the operating theatre for endoscopies to try and see if anything at all could be done to stop his bowel constantly leaking life threatening bugs into his blood stream and keep him well enough for transplant. Things were very unstable and it was a big concern that he wouldn’t be well enough should the transplant call come. 

Wills came back from theatre looking terrible but he was so unwell at that time it was kind of to be expected. As the afternoon progressed he was looking grey and his heart rate was over 200 beats/minute. I had seen him very sick many times but I was really scared by the way he seemed. It was a Wednesday that year too and the doctors were all on the weekly grand ward round. There was no one around and I was beginning to panic. Finally, the ward round got to Wills. He was sent for immediate X-rays. When they had been taken we were asked, as usual, to sit outside and wait for them to be checked. The radiographer came out and told us to get back to the ward as quickly as possible. I asked if she’d seen anything and she just said the doctors are waiting for you. We were greeted in the corridor by our consultant at a surgeon who explained that William had a perorated bowel, caused from the scopes earlier on. He needed to go back to theatre as soon as possible for an emergency operation to fix it. Things were being prepared and he would go within the next few hours. I was warned that he was very ill, that this could be a big operation and that it was very likely he would need to be transferred to another hospital for intensive care afterwards. There were no promises that things would be ok and that he would cope with the surgery as he was already so unwell and full of sepsis caused by an infection in his Hickman Line (the line in his chest he had his TPN through, an intravenous feed going straight into his heart and his blood stream.)

Wills went up to theatre and I started to pack for the transfer. 

After just under an hour, one of the nurses came to tell me I was needed in theatre but she couldn’t tell me why. I went up, expecting to be told that there was more damage than was expected and that I needed to sign an additional consent form for more extensive surgery. The operating theatre is on the top floor of the hospital and, as I was coming out of the lift, I was met by the surgical registrar that should be in the theatre. I asked her why she was there and not in theatre and she simply said;

“We’ve stopped.”

“Why?” I asked and was told that she couldn’t tell me. The consultant surgeon who was doing the operation was waiting for me in the anaesthetic room I had left William in and would explain everything. It was only about 100 metres away but I told her that she couldn’t just say that and not tell me anymore and that I needed to know now, I couldn’t even wait to get to the consultant to tell me. It was then that she told me that they had received a call from Birmingham to say a donor had been found and there was a possibility that William would receive his bowel transplant.

The consultant surgeon explained that he was very sick but everyone know how desperate he was for this transplant. There had been a lot of discussion between the transplant team in Birmingham and the team looking after him in London before I had been told and they had decided the best thing would be to stop the surgery as, amazingly, the call had come while they were still prepping him, and send him up to Birmingham where the transplant team could take over and decide what to do. I was warned that it was by no means certain they would go ahead but there was a possibility. Wills was still unconscious and ventilated for the surgery and they were just trying to decide whether to leave him that way and send him by intensive care ambulance so he could go straight into theatre for the transplant or to wake him up and send him. In the end, they decided to wake him but an anaesthetist  would travel with him with a set of sedative drugs and they would put him back to sleep if he became more unwell.

We left London just after midnight got to Birmingham around 3am. After more x-rays and blood tests William’s transplant consultant came to see at around 5am. He told us that, although surgery was very risky for William with the level of infection he had, he still needed his perforation fixing and they may as well take the risk and give him the life saving transplant if they had to take one at all. We just had to wait for confirmation that they bowel was healthy enough. At 6am the transplant co-ordinator came to tell us it was good and we were going ahead with the surgery at 7am. 

We got down to the theatre where the main surgeon was already scrubbing up. His assistant was waiting for us in the anaesthetic room and explained that, if they opened Wills up and found a, “belly full of faeces” they would have to stop and fix the perforation and the transplant could not proceed. But, as the perforation had only just happened, they hoped this would not be the case and that they would be able to give him his transplant. Thankfully they did. His gift was received.

This year’s transplant anniversary is a very reflective one. We give thanks every year to the girl who saved William’s life in the 11th hour when hope seemed such a tiny and flimsy thread indeed, and her family who said yes when asked if they would consider organ donation. This year’s anniversary is especially poignant.

2. Special moments in Buckfast Abbey

Every year, we light a candle to William’s ‘A’ on his transplant anniversary as well as his birthday, Christmas and any other special day that arises. This is to thank her, pay our respect to her and acknowledge that this day would not be if she had not given the gift of life as she passed away from this world. 

This year, we were with my amazing friend, Julie, yesterday on the eve of this special anniversary. We spent the morning at the Paignton Zoo and then decided to drive onto Buckfast Abbey so Julie could light a candle for her son in a place she had many happy memories of him, and Wills could light one for his ‘A.’ 

There were two sets of candles, a blue set on the left of the nave and a red set on the right. William chose the red side and then chose his candle holder and put in a candle. He kept trying to relight the candle whilst still alight to add more fire and make her candle burn with the biggest and brightest flame among all of them. 

We paused and watched it burn for a while, talking about all the things he has done, thanks to her and, naturally, about his feelings about waiting for a second precious gift. 

Tonight, I am reflecting back on that time six years ago and the things that have happened since because of our wonderful donor, and I’m raising a toast to her with the Buckfast Tonic Wine that we bought home with us.

3. Reflecting on a special anniversary

I have always appreciated having the anniversary of William’s gift being given the day before the anniversary of him receiving it. It enables us to spend a quiet and contemplative day reflecting and remembering our donor and her family before a day of celebration of the life she gave him. This year feels very different. It’s very strange. I am SO thankful and that is at the centre of my feelings but it also feels confusing. 

I thought bringing it all back the way anniversaries do would make me feel fearful and anxious about the second transplant but it isn’t at all. Maybe it’s because William had a horrendous night last night with more output of undigested food and water from his stoma than I have ever seen in one night before. Or maybe it’s because, after our wonderful holiday, I feel more ready than ever for this next chapter to begin. Whatever the reason, I find myself wishing and wishing that the phone would ring again on this day and that we could move forward with this second transplant. I think a lot of that is because it feels familiar to go through a transplant at this time of the year. It feels right that the Christmas Market should be there for me to walk through and eat from during breaks from the ward, it feels right that it should be biting cold as I walk from the parent’s accommodation back to the ward (then the Thistle Hotel and now the fantastic Ronald House), it feels right that there should be Christmas lights and music playing. It just feels right that it should be now but that’s just because that is what is familiar. When we go through stressful times we want what is familiar. It’s like a soggy old security blanket.

It’s funny too, I can remember almost every detail of those first hours, days and weeks after William’s transplant. I could always remember it well but I can remember so many more moments right now,  photographic images in my mind. It’s like I need to bottle it all and capture it all. It’s a good job I write because that’s the closest I can do.