May 2010

We are still waiting on the drugs committee to decide if Matthew can have the Clonodine to try reduce his output, this is our last attempt to reduce his output.

The stoma sash comes, but only a prototype, and it does not look as if it will be suitable. It has a hard edge and it will dig into Matthew’s ribs, the Company can change it, so we await another version.

We get a surprise phone call on the 10^th May, our surgeon. It has been decided that the operation will go ahead on the 1st June! We will have to some how manage with the output afterwards, it was felt not to be safe to keep trying to reduce it, and getting nowhere. As every day goes by there is a chance of another prolapse, and with a high output the chances are higher. We also find that the drugs committee are not meeting until the end of June, so we cannot try the Clonodine. We try to see if our GP would prescribe it, or our local hospital, but neither of them will as they have no experience of it.

There is a sort of relief, as we now know what is going to happen and when. It is rare to have a planned date for an operation, every other one has been an emergency. Very mixed feelings though, how will we all cope with 3 litres coming out of Matthew’s bottom? We are making plans to make sure that he does not get the notorious sore bottom due to the acid that will be coming out of it. We ask everyone we know what they do to prevent it, and finally fix on the “Irish mix” as we call it. We have stocks of Ilex that we bought in preparation for the operation when it was due last January.

Matthew goes to the Donkey Sanctuary with his friend Dylan. Dylan loves going on the donkeys, Matthew will not even go near them! He has a great time looking at the other animals, and after Dylan has his ride they have fun in the play area. We have a great time, but my head is filled with thinking about Matthew’s operation.

Then on 20^th May, the worst happened, his stoma prolapsed again, we went to A&E. His surgeon did not want to operate as that meant touching his gut again, and that would mean no pullthrough on 1^st June. That trip to A & E was awful, they decided instead to try to stitch the stoma back in using a tracheotomy stitched to either side of the stoma, with the central part sticking into the middle of it. They gave him something to calm him, and then started to try. Well, he screamed and screamed, and the more he screamed the more the stoma came out. After an hour, they stopped trying and decided to take him to theatre to do it. Here we go again, but no touching of the actual gut. The poor little man, he has been held down by so many people whilst awful things are done to him, it is painful as a parent to watch and know that there is nothing you can do to help, or to stop it. I would have screamed if they had tried to stitch it to me whilst I was awake. We really had no idea what they were trying to do, although they did try to explain before they tried.

Matthew goes to theatre, and we sign the consent form, but are not exactly sure what they will do? Our surgeon said may decide to do the pullthrough operation now, if he can’t fix the stoma with the trach. Ideally the surgeon wanted the operation on 1^st June so that the other specialist surgeon could do the operation with him. He also wanted the labs to be prepared so that the biopsies could be done. What mixed feelings we have whilst he is in theatre. Part of us wants the pullthrough, then it is over. Then the other part of us wants it to be done with the two surgeons as planned.

Matthew came back from theatre with this “thing” attached to him, stitched through his tummy. I have never seen anything like it, and I knew keeping a bag on would be almost impossible. The span of the tracheotomy was so large that even using the largest flanged bag, the whole could not be made to cover it and protect the skin. We left hospital the following day, very apprehensively.

That then started one of the worst weeks at home, the bag just did not stay on, and his skin was not at all protected. His whole tummy started to burn, and the skin started to almost fall off. We tried covering with duoderm, and then put the bag on. I can’t tell you, we tried every thing.. We were very lucky that our stoma nurse lived around the corner from us, she was fantastic and came to see us in her own time in the evening, I had phoned to ask if she had any ideas what we could do. She was amazed, she had never seen a trach in a stoma before. She suggested just trying to patch everything around with duoderm, and not pulling the bags off when they leaked.

After 4 days when I was taking off the duoderm, one of the stitches came out, I then had the tracheotomy piece out of the stoma, and one side still stitched to his tummy. I felt sick. I was so lucky that there happened to be a nurse at our house, she cut the stitch and he was free.

We went back to the hospital, and they wanted to put it back in. We said NO, we would live with the hope of no stoma prolapse for the next six days, then the operation could go ahead. At least we could put a bag on again, and his skin had a chance to recover before he was cut open for his operation. What a six days that was. No stress, no argument, Matthew having anything he wanted. (much as usual really!) We kept him from running or getting excited. It was worth anything to keep that stoma from prolapsing.  The stress on us was unbelievable.

People ask us about sleeping patterns, routines and lots more. I think….well what hope do we have?  Even getting a nights sleep is nothing short of a miracle!

The 31^st May arrives and we go in to have pre op blood tests. We arrive at 10, as arranged, still waiting at 1, so go home. Back again at 3, and they are done at 4!  Bank holiday Monday! We did have better plans for the day before the operation!

We go to sleep on the last night of the month, knowing that the operation is the next morning! We have to be up at 4 to make sure that Matthew has his last drink of milk, then nothing until after his operation. We did not sleep much that night, far too much in our heads!

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.

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.

Can someone please tell me what someone needs to do to make a comment here? And to make sure they can read the up to date blog? Some people can read it up to date, and leave comments, and others can't, I am not technical, and thought I had done well to get this far!

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?

January 2010

It is very frightening as we have no idea if his gut will be long enough to be able to survive without TPN. Midnight passes and Ian and I say “Happy New Year” to each other with a heavy heart. Ian and I both stay at the hospital day and night as this time, Matthew is in a serious and unknown state.

He is not allowed to eat or drink for 2 days, and it does not bother him as he is too ill. Then he suddenly decides he wants milk, and lots of it. Big problems as they want him to only have very small amounts, and sip. This is not Matthew’s style, Ian and I have to take it in turns to pretend to see if Tesco have delivered his milk to HDU. We have one bottle every 3 hours! The nurses smile, they think we are mad, but do understand. He is attached to IV fluids, but that is never enough for Matthew! Gradually he is allowed to eat small amounts, and we find that everything is just running through him, and such speed. His stoma bag is filling up as we watch it. Everyone is getting concerned, will he be able to cope without going back on TPN. Only time will tell.

After a week we are back in our second home ward 79, and Matthew feels very much more at home. He is still seriously ill, but a lot brighter, and Ian and I take it in turns to be at the hospital. Matthew’s stool output is still huge, and he is eating well, but his weight is very low. He has lost a kilo in two weeks. We stay on the ward for 2 more weeks then we are allowed home, with weekly trips back to the hospital.

It is now the 15^th January and we head home. The Christmas decorations are still up, Matthew wanted to see them when he came home. It was really hard when either Ian or I came home whilst he was in hospital, to see all the decorations, and have the sick worry in our hearts at the same time. We really thought we may have lost him this time. Yet again, Matthew bounces back and comes home very happy.

He now eats more food that Ian does, and drinks 2 litres a day of fluids. The fluids are so important so that he does not dehydrate. His stoma output at this point is almost 5 litres. We are emptying his bag at least every hour, and it is leaking so many times we lose count. It needs completely changing at least 7 times a day, and that means complete change of clothes and or bedding. We are so worried, this high loss can take with it all his essential electrolytes, so we have to be so careful, and keep a close eye on him.

All that Matthew eats is coming through him in less than half an hour, he is impossible to fill! It is now 26^th January, and we go to have blood tests at the local hospital, and Matthew is so sick we go straight to the ward as we have open access, he had full blood tests, and then actually seems to be OK, so we go home relieved. Not for long though, he is sick again that evening, so we head off the RMCH A & E. It is unusual for Matthew to be sick. Blood results are OK, and Matthew seems to recover as soon as we are at the hospital, typical!

We end the month with a lot of worries, and a lot of bag changes, but at least we are at home! Night times are a disaster, we are either up emptying/changing bags, or delivering his milk. Sleep is a luxury in our house.

His birthday at the end of January was great. We still had the worries, but we were doing our best to put them to one side for the day.

We also vow, we will not leave the Manchester area until after Matthew has his pullthrough. We feel safer being close to the hospital.  If we had stayed in Wales for one day longer at Christmas, then the outcome could have been very different.

The end of January comes and at home. No plans for the pullthrough surgery which had been planned for the 8^th January, we have to hope and pray that we do not have another prolpse before that day comes.

The pictures below are mid January, Matthew is in the ward playroom, and as you can see from the second picture, his line at this time is in his neck.