Nearly there...

We should be going home the week after next :-) :-) Wills is soooo much better after his op. He is still pouring out way too much from his illeostomy. Some tests suggest he may have a complicated storage disorder - his cells don't store some of the nutrients they should and so they leak into urine and into his bowel. This could be causing his "leaky bowel" and inability to absorb in the gut, as well as neurological problems. He needs a skin and bone biopsy to clarify the diagnosis. We have been trying to get the neuro team to see him for the last 2 months (his consultant and reg left at same time so he slipt though the net a bit) and they finally caught up with us yesterday and said the biopsies were needed. Doh, could have got them 2 weeks ago if they had actually spoken to the gastro team and surgeons. The NHS still struggles with multidisciplinary working. The neuro reg also said Wills needs urgent physio while he is in as he loses function when he is ill...I asked for that on his first day in... Oh well. Things are coming together. Wills is back to 20 hour TPN and fluids for the first time in 2 months and we can take him out during his 4 hour break. He can also toddle free of lines for the first time in as long. I can't wait to get him out of here later this afternoon :-). If all goes well with stabilising him on his TPN we should be home the week after next :-) :-) I can't wait for us all to be home together again.

Tummy Trumps (a long overdue update)

I have been so rubbish at updating this blog lately that readers have switched to Paul's (see blegspot.blogspot) for updates. I am sorry, please do come back and I will try and update more regularly...promise....
In my defence, Paul does go home to our lovely internet access every evening and I have my precious hour a day in Starbucks where I have to juggle priorities and keeping up with work tends to dominate. For some reason, I can't access this on my BlackBerry but can get on the running website, Fetch, hence being able to post brief updates there. That's my excuse, another reason for blog silence has been that the last few weeks have been so confusing with William's illeostomy discussed and discussed and decisions changed and altered acording to how many bugs and yeast he had. It has all been a bit much to keep up with, let alone tell others about.

Even Paul had a bit of a gap in his entries and updated just yesterday. There is no need to repeat what he has said so well so I have shamelessly lifted the following with some different pictures of Wills over the last week. He wanted his beloved Thomas books as soon as he regained consciousnes, although in his bleary post anaesthetic and morphin pumped state he did ask me where the books he was cuddling had gone! I have chosen some pictures that show the stoma. I will take a better picture of that for the blog, not least because it may be of interest to another family who are about to undergo a similar procedure. William has a "double barrel illeostomy" where both ends of the cut bowel are bought through the skin. One drains the stool from the small bowel and the other, the mucus fistula, drains mucus from the colon and can also be used to wash out the lowere bowel. There are also some lovely pictures of Wills with Grandma and Grandad on Monday when he was feeling a lot better.

So, over to Paul...

"William has taken a little while to recover from his operation. He discharged himself early from paediatric HDU simply by constantly declaring to anybody who would listen that he wanted to go back to his room, and generally refusing to co-operate unless his demands were met. I can’t think where he gets his stubborn streak from. However, progress has been slow since then. He took a while to be weaned away from his morphine pump, and confidence in his ‘magic bag’ (the ileostomy bag) has been knocked by the realisation that there was a deal of initial pain involved. The ileostomy itself is none too pretty, and William is keen to ‘clean it off’. In fact, he has two chunks of his small intestine poking through his abdomen wall – ‘stomas’ - and cleaning them off would not be the way forward. But they are doing their job, as they are constantly leaking the unpleasant fluid and gas that were making him so uncomfortable before Christmas. The slight downside is that they are leaking so efficiently that William is now on enormous amounts of IV replacement fluid and still suffering symptoms of dehydration. He has also developed a slightly disconcerting habit of unconsciously farting through these ‘stomas’. As I earlier blogged, there is some quality toilet humour ahead of him.

He is really on the mend now though, and has gingerly returned to his habit of toddling around the ward with his daddy literally in tow. He is re-asserting himself as the ward character, although more through his fantastic eccentricity than any charm offensive. After he had told yet another nurse (S – a wonderfully efficient and caring professional) that he didn’t ‘want that one’, I thought it best to start trying to address his issues with politeness. “Let’s role-play,’ I suggested. ‘I’ll be S. When I say hello, you say hello S.”

‘No,’ suggested William, ‘you be a giraffe.’

A little more work is required. "


Back to me now and today's update...

The doctors were very concerned about William having such a huge output from his stoma. We tried loperamide (immodium) but that just went straight through him. We are now trying an IV drug called octreotide. This is a drug that acts on endocrine system to switch off natural products the body is over sectreting. It can be used to control heavy bleeding, to shrink tumours and to treat over production of insulin. We are hoping it will get control of William's huge over secretion of bile and gastric juices. So far, it looks promising. The draw backs are that it is an artificial version of the hormone that acts as a growth hormone inhibiter and also inhibits insulin production. Wills is on a very low dose so we are hoping it will not have these actions. Even if he does, we have to get on top of the secretions and we hoe to use the drug for just a few months. He is also struggling with an ever dropping red cell count as a result of his losses. He is having another blood transfusion today. We were warned that Wills would take his time to settle down after this op.

We all have to be patient but it is getting harder on us all. Lots of discussions are now taking place on how we can manage long admissions like this in such a way that we are all happy, especially Hope, Ellie and Mum and Dad. Plans are being formulated but can't be blogged until they are discussed further and everyone is happy about them. I just wish we could be given a home in Chelsea so we could always be together and the girls could be schooled without any disruptions. Shame William's hospital is in one of the most exclusive and expensive areas of the country!