Saturday 15 January 2011

February 2010

Matthew starts back at nursery 3 mornings a week. He loves it, but it is like starting all over again. It all seems new to him. I stay there in a room with a cup of tea, just in case he needs lots of bag changes. The nursery can do them, but coping with changes so often would be hard. After a few days, he is happy to be left there, and the bag changes seem not to happen during the mornings he is there. We are very lucky he is at a nursery where 30% of the children have special needs, the staff ratio is one to 6 children, and Matthew’s teacher was a nurse. We feel so confident leaving him there, it is the only break he gets away from us, and us from him!

We see the gastro consultant, the dietician and the surgeon every week. Matthew is weighed and there are great discussions about what Matthew should or should not eat. The decisions seems to be “no sugars”, and we may have to change his best drink “pepti Junior” to something else. This will be a last resort! So, we try no sugar at all. Matthew copes quite well, although he does prefer crisps to chocolate. It does not seem to make any difference removing the sugars, output still too high. He is losing weight and starts to look thinner than he did in January.

The whole team are worried that Matthew will have another prolapse and that could be fatal, the meetings are an attempt to try to find out what is causing the high output. It was felt that a pullthrough with such a high output would not be successful, as it could literally pour out of his bottom. Gradually his output comes down to 3.5 lts, although not based on anything that was changed from a diet point of view. Each week we meet and achieve very little.

His bags leak so often on some days it has us tearing our hair out. On some days I just sit and cry and can’t cope, and am a really worrier and just feel stressed. Ian is far better at keeping his head in one place, my head just runs away with its self. We are a good team. He is very level headed. For the bags to stick, it is better if it is done with 2 people, they seem to last longer. So, we have to stop every thing we are doing, no matter what it is, and do the change. Matthew has now become used to it, but still screams as we take it off. He also tries to hide the leaks, pulling his Tee shirts down to try to cover it! It always seems to go when we are about to eat, or when we are out shopping, or when we have just gone to sleep. I can’t count the number of nights that we are up changing his bags and all the bedding in his cot…awful. He is then wide awake and so are we. Often at 4 in the morning, we are all sat up watching TV! If we add this to the numerous times we are up getting milk for him, then two very tired parents.

By the end of the month, we are down to only 3 bag changes on some days, so a lot better. We are adding benefibre to his milk, and seeing if anything makes a difference. Not really getting anywhere. We try so many different variations on intake, and what we mix in or take out. Nothing seems to help.

Meanwhile we need to try to start the potty training again…but we soon give in. We are so tired, we have no energy for the potty battles. He knows when he wants to pass urine, and he asks for a nappy to be put on!

At least we have not had an ambulance trip this month, and we have been at home. The pressure of waiting to know when the operation can happen is very hard to live with. We know it can’t be for at least another month because his gut can’t be handled again so soon after the January operation. Such mixed feeling, we want the pullthrough so he will be safe, but at the same time we do not want it as we are also living through the problems that our friends families are going through after the pullthrough.  Some are going through 20 nappies each day, they can’t go out as the nappies leak stool through everything for months. The sore bottoms seem awful, and that seems to be a problem to everyone as what comes out is so acidic it burns the skin.

Let’s see what the next month will bring?

3 comments:

  1. Wow Stella, again, breaks my heart to read it, but great job!! We know how you feel about the multiple bag changes, people wonder why I go almost everywhere with Ashley and Hartley when Dan is at work, (or why Ashley and I didn't return to work) because when you are changing 5-10 bags a day 4 hands are much better than 2.

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  2. Wow, I feel like you are reading my story!!! As you recently know, my son Andrew, just had his pull-through and you have been giving me advice on the HD support group. I am so glad I am not having to go through the bag changes but yet I have not even started the beginning of the pull-through journey. I may be changing my mind in a few days!
    Candi

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  3. Thank Candi, I will be there for you at any time if I can help. It is a long road,and one that is a little easier if you are holding hands with someone who has already been there, Stella

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