March 2010

On the 4^th March, we have our first “normal” trip to A & E at our local hospital, Matthew goes to get his potty and bags his head very hard, He is very sick and screams that his head hurts. We have never confronted A & E with any thing but gut problems, so all this is new to us. They decide to keep us in overnight to be on the safe side. Strange, as no “normal gut worries”, by 2am Matthew was running around the hospital corridors and asking for a midnight feast. Lots of biscuits! 

Matthew getting his potty was yet another attempt to try to urine potty train him! The surgeon feels that if Matthew is potty trained before his operation, then the brain connection has been made so that he knows when he needs to wee. This apparently will help him understand the feeling of wanting to pass stool. The other advantage is, he will not have urine in his nappy after the pullthrough.

This is a very frustrating month, we have been doing everything that the hospital suggested as far as Matthew’s diet is concerned, and we are now adding ideas of our own. They seem to have run out of ideas, except on possibility called Clonodine. Our surgeon has convinced us we now must try anything, we can’t run the risk of the stoma prolapsing. We had been reluctant about this new medication as it has to be carefully monitored, and Matthew would have to spend more time in the hospital whilst they tested it on him. There was now a space reserved in theatre for the pullthrough operation to be done in April, but only if the output was down. So, three weeks to see if this worked. Not so simple, after many phone calls, it seems that the medicine has to go to the medical committee to be approved and they meet up once a month, and we have missed the meeting. So, very frustrating, and Aprils operation has to be put out of our heads.

It is hard too as Matthew is becoming more aware of all that is going on, and he understands that his stoma will be removed at some point. As he is going to bed one night he says “mummy, I don’t want any more operations”. It breaks our heart to hear him worry like this, and it is hard as we cannot say anything but the truth. Whatever has happened, we have always told Matthew the truth, however hard that may be. He is only just 3, and his understanding is unbelievable.

The output is still too high, we are still completing fluid balance sheets every day with the weight and time of every bag empty, urine in nappy and every drink and each food he eats. On some days when the figures are high, and we can’t see any reason, we are so very disheartened. Every single day is a worry. Every single time Matthew runs around excitedly, I stress. It is the excitement that causes the stoma to start prolapsing. It is so hard, we do not want our worries to show and we don’t want him not to live the life of a 3 year old.

Matthews bags are still ruling our lives, and we have no idea why on some days we have to change them 7 times, and other days they last all day. It makes planning anything almost impossible. We also feel like we are almost living on borrowed time as far as the possible prolapse is concerned. We have been lucky so far that it has not gone again. We are still up every night supplying the "milk", or changing bags and bedding.

He is very happy in himself, and we have a lovely time at the end of the month, his two friends who also have HD come to visit. Fraser comes from Scotland, and Jacob from Wigan. They have a lovely time playing together, and it is good for them to get to know each other. I am sure they are likely to have similar issues in their futures, and it will be good for them to all have each other to compare notes with, and hopefully support each other. There are not many children who know each other that are going through what they have been through. If you look at the picture of the 3 of them, you would have no idea what they have all been through, and are still to go through. Their parents have become friends too, and their support whilst we are going through all of this is so vital to us. Whilst everyone tries to offer support, it is one of those times when you really have to have been in the same situation to really understand.

So, we end the month again not really knowing what is going to happen or when? We count our blessings each day that we have no prolapse.