It has been a while..

It has been a while since I last posted and Hope and Ellie, still at Grandma and Grandad's, are begging me for an update. We are still in hospital but now have William's electrolytes balanced. He needs some adjustments to his TPN so we this week is a tedious week where he is having additional potassium and sodium in a drip alongside his TPN while new bags are being made up. We should get these on Thursday so can finally go home. It has been a frustrating start to the year, with only 2 weeks at home! 2007 looks set to continue in this fashion as William's consultant and surgeon have agreed that he needs an illeostomy and perhaps other surgery to "decompress his gut", i.e. to drain the fluid and gas away. This is not going to happen immediately as we first need to establish if William is likely to benefit from an intestinal and, perhaps, stomach and liver transplant. So, this week we have finally been referred to the transplant team in Birmingham. William is not yet sick enough for a full transplant assessment as this happens when the liver begins to struggle much more than William's is at the moment. What will first happen is that Paul and I will meet the team and discuss if this route will be right for him at a future date. The outcome of that discussion will determine the type of surgery that will be done later in the year.

I can't wait to get home on Thursday and have some time to normalise! I miss the girls so much but they have been fantastic and very brave. Love you loads xxx

Back to hospital

Just as we were all settling back at home and Mum and Dad are back at their home we were called to say William's potassium levels are low and he needs some different fluids and a blood transfusion as his iron levels and red cell count are also low. So, I am just packing and back to Chelsea and Westminster we go. It is really awful, poor Hope is distraught! These are the worse times in all of this.

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.

A new blogger

William's big sister, Hope, has now started a blog so you can follow her perpective on our life. He address is www.hopemilne.blogspot.com. Do go and visit her blog and say hello.

Still no new line...

I have managed to escapte into Starbucks for an hour or so while William is with out community team member from CHASE. I really need to get some work done so this is just another quick update. William's line came out on Thursday but we have still been unable to put a new one in as he is still very poorly with infection. They feel the infection is coming from his intestines and is "systematic" meaning throughout his body, rather than just simply a "line infection". The fact that the line is out and he is still poorly does support this. We are hoping to get the line in tomorrow or Friday as he has had very little nutrition over the last month and is looking rather pale and skinny. It has turned into a lot longer haul than we thought and poor Hope and Ellie are getting upset with yet another period of being apart from Mummy and Mummy is feeling exactly the same way! It is all very wearing but can't be helped. We all hope the new line is in as soon as possible and Wills can come home so we can all settle down again!

Another quick update

This is just another very quick entry as I am home very briefly for tea and to collect William's TPN. I am keepnig diaries at the moment so will post a reflection on the last few weeks when we are home and back to normal.
William had his infected line out on Thursday and has spent the weekend with no Hickman Line at all, surviving on fluids (and IV antibiotics and antifungal treatments) only through a cannula in his hand. His infections were too bad for a new line to be inserted straight away. We are hoping to get the new one in tomorrow so he can go back onto TPN. We really hope so as it has taken at least 3 attempts to get cannulas into him as his veins are so scared from all the IVs he had before his port-a-cath and Hickman Lines. Once the line is in, we will move onto thinking about how we are going to keep the infections in his guts under control. This will probably involve antibiotics but, as I said before, this could cause more problems as the drugs would just sit there. William's gastric aspirate (that drains from his gastrostomy) is really yukky and and there is more of it than ever so there is a chance we will have to discuss the possibility of an illeostomy (a piece of intestine through the skin to enable the waste stitting in his gut) to drain out. William's consultant is covering the ward this week so we'll see what he thinks. Something needs to be done though as the poor thing is looking so pale and "bilious" with all this sitting in his stomach.