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!