Just a quick update, Brett had his gastrostomy done on 25th March and everything went well.  He is so happy without the ng tube and is making great progress.  His dietician is very pleased with him and commented on how healthy he's looking now, she weighed him on wednesday and he is now 10.5kg - she said she needs to keep an eye on him that he doesn't put on too much weight now!  I never thought I'd ever hear that!

Brett will go back into hospital sometime in June or July to have the PEG changed to a button, and then hopefully we will have a long break from hospitals!  I've uploaded some pictures into the photos section of Brett's 'new look' without his ng tube, so handsome!

Brett's big brother Garry has been doing some fundraising for the Down's Syndrome Association.  He today brought home from school a completed challenge that he's been working on for his ASDAN.  You can read about it here... brettjack.co.uk/sponsor.html  He raised a brilliant £40.93 which we've rounded up to £50 with a bit from the family.  Well done Garry, we're so proud of you!!

More news - Brett was weighed this week and he weighs in at an astonishing 9.98kg!  He really is a little star!

Brett is doing great!  He's getting very heavy!!!  I never thought I'd ever say that, but it's true! lol. (over 9kg now!) He's getting much stronger too and his head control is fabulous now. Now that he's happier in himself we're working hard with the physio and he's getting a visit every week from a physio assistant, and he is also having two visits a week from a portage lady who is brilliant and this is very motivating for me too, she's giving me lots of ideas of things to do with Brett.

We're managing to get out a bit more now the weather is slightly kinder and I've started to take him to a toddler group at the church, and during the half term I met up with a group of mums who have children with downs, at the sea life centre, so that was good too.

From the medical side of things Brett's Illeostomy is staying as it is for the time being, Mr L says that he sees no reason to mess with things at the moment and that as Brett is doing so well with tolerating all his feed and no reflux, then he's happy to leave things as they are.  He said that although the tests for Hirshsprungs came back negative, he wouldn't be surprised if Brett had always had some sort of bowel dysfunction, (and the reflux was only a symptom) and I definately think that's possible considering how constipated he used to be and all the suppositories he needed.  Brett's EEG came back as still having an underlying predisposition to epilepsy again, so they are keeping a close eye on things and we are keeping a diary.  He's being reviewed by the neurologist 6 monthly.  Brett's cardiac appointment was in December and they did an echo that was ok with no signs of any further clots but Dr M wants him to stay on the Dipyridamol.  He has had some thrombus screening done at Dr M's request following what happened with the clot in the R Atrium, and it turns out that Brett has a lower than normal Protein S, I had never heard of this before but now Dr M has sort advice from a haemotologist and they want Brett to have some further blood tests done to rule out other clotting disorders. In the meantime he has to continue on the Dipyridamol.

Well, that's about it I think, although I've probably forgot something!  There's always plenty going on with Brett! I just want to get the Gastrostomy out of the way now and hope for a good year and lots of time at the caravan to make up for last year!!



Brett with his birthday Villa cushion.



Brett and Daddy - this is what too much shopping does to men! - they just don't have the stamina us women have!

Brett is getting bigger and stronger by the day!  He makes us so proud, and has really proved what a fighter he is!

We are looking forward to a fab christmas and just in case I don't get round to doing another update before then..... Hope you all have a very very merry christmas and a happy new year!

After 10 long weeks in hospital, we are home!

Thank you all so much for your thoughts and prayers, we really appreciated it during what has been a terrible time.

I still find it very difficult to think about how poorly Brett was, it was the darkest time ever and I don't think I'll ever forget it as long as I live, but he was a fighter and we never ever gave up the hope and belief that he would get better. 

There was so much that happened that it's difficult to sum it all up, but the short version is that Brett doesn't have Hirchsprungs like they originally thought, the biopsies came back negative much to the surgeons surprise. What they did find was that he had a very bad colitus, and that the colon had started to die off in parts which was what caused the pain, the ascites and all the loss of protein. He had lots of abdominal pressure from the ascites and his bowel wasn't working properly, he aspirated feed onto his lungs, he also developed plural effusions and had to have 2 chest drains as well as an abdominal drain. He had 2 blood transfusions in ITU, and for over a week he had continual transfusions of a blood product called human albumen serum. During the time before he was took to theatre it was found that Brett had a blood clot in his right atrium and that was treated with Heparin and clexane, the last echo he had on sunday showed that it has gone (thank god) and he has now been put on a medicine called dipyridamole to prevent any further clots.

In theatre the surgeon had no choice but to form an ileostomy which is a stoma from the small bowel. It is hoped that in the future he will be able to have this reversed. He is tolerating his feeds well and we are hopeful that he may even be able to come off the Omeprazole eventually but the doctors yesterday were reluctant to say whether his reflux has gone or whether it is just being controlled, he still has his feeds thickened. Last night he woke up half way through the night with symptoms of reflux again, but settled after I repositioned him in his cot.

I think that if we still want him to have the gastrostomy surgery then they would have to consider whether to do fundiplication at the same time because of his history of reflux, but its much too soon for us to think about this yet.

Since being home with Brett I have been a nervous wreck, I think it's because of losing the security of having the nurses and doctors around. I got into a complete mess last night changing his stoma bag and yet I've been doing it in the hospital with no problems!  I am hoping as the days go on I feel less anxious.