Itchy, sore and pooey (Day +38)

I apologise in advance if this post is poorly written, but I know many people are eager for some news...so where do I start? As Tim mentioned in the previous post, I came in to the hospital last Thursday morning for a routine blood testing session and appointment with Dr T.....and 1 week on we are still here!

The extremely rare bug that Max 'somehow' picked up...(I have my suspisions)...has been cleared so far... although we were told it could re-emerge, luckily it is sensitive to a lot of antibiotics so is not too mch of a concern. So, that is not why we are still here.

Max's skin biopsy results came back on Tuesday showing that his rash was due to Graft vs Host Diesease (GVHD). It is a real bummer as we were told all along that the risk of getting GVHD is significantly reduced when using cord blood (as opposed to bone marrow), but of course the risk is still there. He was put on a ridiculously high amount of steroids for a few days, and today they have been reduced (as being on this high dose for too long can cause additional complications). His skin looks as though he has been doing it tough in the Bahamas (The Dr's equated it to severe burns) and now his tan/burns are shedding. Nothing has been sticking to his skin which has proved a tad of an issue with regards to the dressing which is keeping his Mr Hose (Hickman line) site covered up and infection free. We now have a sock-like device covering his torso, and hope that someone can come up with a better and more permanent solution tomorrow.

Max's magnificent motions of the bowel have also been a concern. They also believe this to be GVHD (of the gut). He was put on NIL by mouth for 24 hours, to try to calm down his bowel......but this is a catch-22 as the huge doses of steriods he is on is making him ravenous. Max must have thought I had gone nuts with my continual response to his food requests being....."I can't find any at the moment". Unfortunately he is not a stupid child, so I have now begun telling him the truth. He gets it, but is not a happy chappy. The dietitian has said that Max is allowed to eat very small amounts of food which are low in fats, sugars and lastose. Dr's have ok'd this but said it the diarhoea continues Max will need to go back on intravenous feeds (TPN). Naturally the mention of intravenous feeding set alarm bells ringing......this means an extended stay in hospital..... ..bummer, bummer, bummer! Message to Max's bowel: 'please start producing at least some semi solid number twos!!!'

Today Max has also been having quite low temperatures (34C-35C) and very high blood pressure readings. High blood pressure may be related to the high dose of steriods he is on, and low temperatures can be a sign of infection - but seen together can be a sign of neurological problems......sigh....just something else to add to the mix. Some simple tests were done on him today, and naturally he ws fine, but that was not something I needed to end the day!

Here's hoping tomorrow is the start a better day and each day he gets better and better.....we all want to go home!

Thankyou to everyone who has sent such lovely messages....(and gossip!). I will get around to replying to you all...have just been too tired and lazy to do so.

xxx to all