Thirst and The Beginning of the Story

"I'm thirsty" and "It hurts" have been the only things William has had to say today. He is very sore and mainly talking in wines "Uh Aagh" meaning "it hurts" and so on. He is allowed 20 mls per hour of water to sip and that has been the absolute highlight of his day. No matter how rubbish he is feeling, he will always perk up for his water! Paul and I both searched Birmingham for a Thomas cup and bowl for him to use to dip his sponges into the water. Paul finally found a lovely set in Argos, just 5 minutes away! Just in case, I got him a space man beaker with a built in straw so he has been sucking on that too. It is lovely to see him taking something by mouth for the first time in 3 years and it was fun buying him some special things to drink and eat from when the time comes. It wasn't such fin battling with the crowds though - Christmas shopping is well and truly on the go in Birmingham.

William is continuing to do well. Of course, he is a bit sore. He hasn't really wanted to do anything except lie and look around. He hasn't even wanted Thomas stories and only watched a video once. He has, however, wanted water whenever it was offered and demanded it when not.

His blood pressure and heart rate have been a bit high and he is breathing rather fast. I am sure the pain is contributing to that. As I am writing, his oxygen levels are on the low side of OK so he may need a little oxygen wafting in his direction. This is probably due to a combination of the morphine, pain and swelling as the new bowel gets settled in and starts working. It is working too. It is funny the things that can excite you. Paul and I have been very excited to see William's stoma move to let the stool out. His old one never did that and we had no idea you could see the peristalsis in the stoma. As his bowel is clearly working William was able to start a tiny bit of feed today - a continuous infusion of diorylyte running at 5 mls per hour into his jejenal tube. He seems to be coping with that fine. His stoma losses are still very watery but there are semi solid bits within it. Already, his new bowel is doing great. It will be a slow process building up and establishing feeds but he has got off to a great start.

The main concern today is that he has a bit of a high temperature. I am sure this is all due to the operation itelf but we have to make sure he isn't brewing an infection. He anti-rejection drug level is too low so his dose has been doubled. If the level is still low on Monday he will have to have the drug intravenously until he is able to absorb it more effectively. These are all teething problems really but have served to remind us not to get too far ahead of ourselve because he is doing so incredibly well. We still have a long journey to go on and there may be bumps along the way.

William is on heaps of oral and IV drugs. Half of them I have never heard of. He is also on four different fluid drips. It is strange for me to go from being totally on top of his condition and treatment and doing everything for him to sitting watching a complicated regime that I have no idea about. At least I can still change stoma bags and have the excitement of giving him his oral meds and water. So far, the oral ambisome is his favourite. He did refuse to take the tray full of 8 syringes at bed time. I'm not surprised, it must have looked daunting and he was very tired.


So, now back to the beginning of our transplant story.

There was going to be quite a blog about Wednesday before we had any idea that we would get the call for William's transplant. The Chelsea and Westminster team were keen to have a look at William with the endoscopy to see if there was any obvious inflammation that could be contributing to his 'leaky gut' and treatable with steroids. There was a cancellation on Wednesday morning and so we found ourselves off to theatre at 9 am. I was told it would only take half an hour or so and was getting wuite concerned when William was still there three hours later. Someone had seen the gastro nurse specialist, dressed in scrubs, rush to his room to collect a box and rush back. Later, he came to see me to explain that they had seen a nasty blackened piece of plastic backing from a gastrostomy tube that had been lost in his gut for over 2 years. Having found it, they were keen to get it out so the surgeon had been called in. Of course, if William's gut had worked properly this would have been passed through rather than just sitting there but it had finally found its way close to the illeostomy. The illeostomy itself had narrowed causing a 'stricture' and that also needed dilating. So, William's endoscopy had turned into a minor surgical procedure.

He was slow to wake after a longer aneasthetic than planned. When he did wake, he was in extreme pain. He was given a shot of morphine and dosed a bit. However, throughout the afternoon he became very unwell with a very high heart rate above 200 and very sweaty. It was the gastro grand ward round and the consultant took one look at him and sent him off to x-ray. He had a chest and abdominal x-ray and we were told to wait while they looked at the pictures. Soon afterwards, the radiographer came out and told me their doctor had looked at them and was on the phone now to William's doctor and we were to return to the ward immediately. I could tell that something was pretty wrong...