Friday, August 08, 2008

Day 5 - Feeling much better about things

I feel SO much better today. We had a fab nurse last night, just what I needed when I got back to the ward feeling ready to bundle William up and go home. Our nurse today gave me loads of time and talked things through. There have been some big issues among the liason team and this week, especially today, has been impacted by some very difficult circumstances. We just had communication break down yesterday and it coincided with me feeling at my most knackered and home sick.

We met with Dr Gupte today, the consultant in charge of Willaim here. Our nurse listened in as there was no liason nurse available. We still have to be really sure William's underlining neuro genetic condition is not degenerative but no one really thinks so. It may mean that we don't get a definate answer at the end of next week but Dr Gupte hopes to be able to give us a clear recommendation. We are lucky as he was meant to be away next week but is no longer going to be. He explained the issues. William's veins are all blocked on the right and patent on the left. He has clots and they have to make sure they are not travelling, hence the CT scan. This is to make sure he is safe for transplant. Dr Gupte acknowledged his frequency of line infections and said that is the main reason why we are here. He said, so far, they have not found any reason not to transplant William but the neuro and venous issues still demand further tests and discussions. The other main issue concerns what William actually needs. He was referred for isolated bowel but they have witnessed the blood he gets in his stoma and the many pronounced veins and collaterals on his tummy. He may also have a bit of fluid in his abdomen. Due to all this, they are querying portal hypertension (although some things don't indicate this) and are now planning a much more detailed liver work up next week. His endoscope and biopsies will be critical and are scheduled for Monday or Wednesday - I hope Monday. The nurse interpreted his message as saying William needs a bowel but there are a couple of potential contra indications to rule out, or at least treat prior to listing, and there is a chance he needs a liver and bowel. I feel much better for knowing where we are at and why the neck ultrasound was insufficient as they only got the neck and they have to make sure his veins are not clotted further down, especially given the collaterals on his tummy. The nurse explained that these are not normal and either due to rubbish venous flow through his body - something that could cause a problem for transplant, or portal hypertension - meaning he would need a liver. We have also been warned that, if his liver tests are inconclusive, we will have to return for a special test for portal hypertension.

Today, our session with the dietician was cancelled again because of the things going on within the team. William finished his cognitive assessment with the psychologist. This took two sessions instead of the normal one because William kept on chatting through all the tests and turning them into stories. He also had his EEG, as did Thomas. I have some pictures but keep forgetting to bring the camera cable over the the hotel. I will post them tomorrow!

Bad news for us today was that William's line is still culturing positive for the same enterococcus bug as it has had for over 2 weeks now We are doubling antibiotic doses and hoping for the best as Dr Gupte doesn't want to pull the line. I guess it is good they can see for themselves the trouble we are having getting and keeping lines clear from bugs translocated from the gut. This also means we will probably have to go back to Chelsea and Westminster from here, rather than home.

Very good news today was that the little baby who had the transplant on when we arrived here on Sunday.

The weekend is free time (apart from IV antibiotics). I am looking forward to the break but it is a shame we 2 empty days with no more movement towards the outcome of the assessment. Tomorrow, we plan to go to the Sealife Centre and Paul will be with us for the day on Sunday.

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