April 2010

Matthew’s output is still varying, and for no apparent reason. We are weakening on the sugar front, he is allowed to eat an Easter Egg, and he loves it, as you can see from the picture!

We have a bit of a scare early in the month, Matthew stoma starts to look swollen, and that in the past has been the start of a prolapse. I get really stressed now when I go to empty his bag, I am scared of looking, just in case. I start to look at sash belts that can be made, they go around the tummy and hold the stoma close to the body. They are usually used for adults, but there is a company that make them for children.  This tip comes from another friend who’s little boy has a stoma, great networking! We measure Matthew and send off for one to be made. I don’t think he will like wearing it though! After a few days, the stoma seems to settle down, we wonder if it looks different because his output is so high again? Unfortunately Matthew gets a bad cold at the middle of the month, his output goes sky high.

Our friend Sara, who has Jacob who also had Hirschprung’s is a great support at this point. Jacob is also going through a “Bag leaking in the night stage”, as well as the day time. We compare notes, at this point, they are going so often, we can’t go out anywhere during the day for 2 days. It seems every time we change one, change his clothes, put the washing on, then it goes again. The washing machine is on all the time.

We all went to the local circus one night, and Matthew’s best friend Dylan and his family went too. Matthew loved it, and managed to sit and watch all of it. He did not like his daddy having to join in and be a sunflower though J. It was a really fun time. Matthew munched through bags of crisps the whole time.

We have friends coming to stay from Germany, and are hoping the volcanic ash is not going to stop them. We always knew that it would be hit and miss them being able to come from Matthew’s health point of view, not for any other reason! They come to stay and we all have a great time, and Matthew is in good health whilst they are here. They give us a break as they keep Matthew well entertained. The picture is a day out in Tatton Park with them, Matthew looks very happy.

He manages most of the three mornings as week at nursery, with time off for the Easter holidays. He is well in himself, and very happy. He even sleeps through on two nights this month!

It is a month of simply getting no where from a health point of view, and no further help coming from the gastro team. We just spend time there every week, for what seems to be no real changes? Where are we going from here, what are we doing? Are we all doing the best for Matthew? Should we be at another hospital? The answer to the hospital is clear as far as surgical is considered. We have the best surgeon possible, who has been open to ideas from the other side of the world too. We ask them to write and ask for a second gastro opinion from Sheffield, to see if they have any more experience that may help us?

We finally get the prescription that we have been asking for, it is for Kaolin, a friends child with HD has been taking this and together with immodium is had helped him.

There are still too many bag changes, and no weight gain. Matthew looks like a twig when he has no clothes on, and everything is a worry. It is sad to see him in the bath, we can count every rib! He has been losing weight since January. Lack of sleep with bag changes and Matthew’s drinking too much milk over night is taking its toll on Ian and I, and we both have bad cold that we can’t seem to shake off. The last few months have been very stressful, and we know we have more to come with the pullthrough in the next few months. A decision may have to be made about Matthew’s pullthrough, regardless of his output. We may never get to the position where it is as low as it needs to be.

At least we manage yet another month at home, and it must be a month nearer to the operation that will at least end the stoma worries.