We are home!!!

Hooray!! We are finally home. It has been a very long and traumatic month for William. He had his hickman line taken out and, unfortunately, the infections had become so well established that it was 12 days before a new line could be put in with some confidence it would not be immediately infected. During this time, William received fluids via a peripheral cannula. He had 2 long lines (longer cannulas that are supposed to last more long term) and 8 cannulas, each one taking 2 or 3 attempts to get in. The poor thing became absolutely terrified that any stranger who approached him was about to grab his arm or leg and stab him. Eventally, anyone who came anywhere near him was greeted with and anxious "all done...all done". It has been most upsetting to witness. Wills also became very ill again last week and no one was sure why he was so poorly and where the infection could be centered. He very nearly ended up in the High dependency unit. Eventually, it was felt that a chest infection was the main problem and he was put on a combination of IV antibiotics for pseudomonas in the lungs, escaped from the intestines! This worked well and the new hickman line was finally inserted on Monday.

We are now waiting for the next phase. Wills is losing about half a litre of nasty liquid from his stomach, via his gastrostomy. This is due to liquid failing to drain from the colon and backing up into his stomach. This is making him feel very nauseous and the gas from the festering liquid is causing a lot of pain. An x-ray showed that there is a lot of liquid and gas building up, so much so that his small intestines can become as big as the large ones and press on other organs, such as the liver. This build up is what is causing all these infections in his line and chest as the bugs build up and get into the blood. His consultant is away this week and we are going to see him in clinic next week to discuss what to do next. It is highly likely he will have an illeostomy to enable the liquid to drain higher and for his intestines to de-compress. This is so probable that we have had the talk from the stoma nurse and have lots of literature and some sample illeostomy bags to look at and, once the decision is made, familiarise William with. I was hoping they could have got on and done it while he was in but they want him to be fully over the infection and better nourished for a few weeks first. He has missed out on so much TPN over the last month and has lost 1.5 kilos - a lot to loose when you only weighed 13kg in the first place.

Wills had a very happy day today and was delighted to be home. He beamed and beamed in the car when we travelled home yesterday evening. The girls were really pleased to see him too.