The first of December comes, 6 months to the day that we took Matthew into hospital for his pullthrough operation. What a six months of hell. We feel we must be getting to the point where we will be discharged? We still have the central line, and are having daily bloods to check the liver function. I can’t begin to explain how very tired and very stressed Ian and I are, all we want is to have Matthew at home and well.
We put up the Christmas tree in Matthew’s play room at home, Matthew has been asking for days when we will put it up! Last year we put them up and went into hospital for 2 operations whilst they are up. We are hoping for just one trip to theatre this time, and a good one, if that is possible! Matthew gets a bit fed up of being connected up to his pumps!
On 2nd December, great news, the blood tests show his liver function is getting better and they can arrange to take his line out. We arrive at 7 in the morning on 3rd December, and he should be in theatre at 9! We are very happy and excited, even Matthew is looking forward to it! He knows line out and then home! His line comes out at 11.30, and we are back home and DISCHARGED from the hospital by 8 in the evening. The snow is all around outside, and we are hoping that we are at home “forever”
Matthew is in his own bed, and only wakes up once in the night, great for him! As soon as he wakes up, all he wants to know is how many days until Farther Christmas comes? He is also very excited by something else, he has nothing attached to him for the first time in his life! No bags, and no lines. He goes to get in the bath and looks at his tummy, and runs to the bedroom mirror to look. He says “Look, I am nude”, that was a fantastic moment that we will never forget! Getting in and out of the bath was so easy, nothing to be looking out for!
He goes to nursery each morning, and joins in all the Christmas preparations. He missed them last year as he was in hospital.
The 7th December comes, and we go for blood tests. Wow, what a good job the team did with the preparation at the end of last month, he had his bloods taken, and stayed still and only cried a little. That is a huge leap! The results come back OK, except the liver function, but it is still the same, no worse. The day after he goes to his friend Dylan’s house, has a great time. Again he says “I can run around because I have no stoma” he goes to bed that night and says “I have had the best day ever”. Music to our ears! He has bounced back so quickly, and now he believes he is better, and that is it “forever”.
On the 12th Fraser, who is the same age as Matthew comes to play with his sister and their mummy Caroline. Fraser also has TCHD, and has had a pullthrough too, although his was when he was a baby, he too has had his challenges and spent a lot of last year in and out of hospital and theatre.
He is now running around the house singing all the Christmas tunes he is learning at nursery. He is so fit and happy, and we are too. Well, we are happy but I don’t think we could be described as fit, we were exhausted. We have all been through so much. Matthew now is getting a cold, and we really want him to be well this week, it is the Christmas concert at nursery. We want him to have the fun of it all, his last Christmas of nursery.
We are still monitoring all his input and output. His output can be down to 1.5 litres whilst he takes the Co-amoxiclav, and he seems to be Ok with that output. He is eating very little, still drinking 2 litres a day, mostly Pepti Junior and dioralyte, and most of it at night. That is very hard for us from a sleep point of view, but he is getting enough nutrition from it. He simply has no routine at all, and sleeps very little, and wakes up often.
Yes, we are so pleased to be home, but it will take a long time to recover. Some evening we would like to watch TV for an hour, no chance! He always wakes up whilst we watch anything! That is hard now, he simply will not settle for a nights sleep. He sleeps in slots of about 90 mins if we are lucky, and it is never when we are watching TV J
The continence nurse visits, we will be entitled to 4 nappies a day when Matthew is 4. She also comes up with different “pants” that hide any daytime leaks. Matthew is still in nappies, day and night. He tells her, I don’t wear nappies at night and only sometimes during the day! Well, where did he get that “fib” from, she did laugh. I had told her about the fights to get him on his potty in the day. She asked him if she could see him go on it, he said “no problem” and went and got it, and sat on it! This made me smile, that was a one off! The night times are the worst times, and we are constantly up changing his bed, from either urine or stool. The stool is so liquid, it goes every where. I was hoping they could come up with a more absorbent nappy, but it seems not.
The 16th comes, and we go to nursery to see Matthew in his concert, and happily singing Christmas music. There was a screen that showed acting from the Christmas story and Matthew was a shepherd. It was all fantastic, and we were so happy. When we left the nursery gave us a DVD of Matthew from the week before. They had taken 12 children to an old people’s rest home and they had been dressed up and sang carols. Matthew was a king, and I cried when I watched it. Matthew told me off, and told me to stop crying. It was so beautiful, and everything we had wanted for him at Christmas had come true so far. I looked at him happily singing, and looking so well. No one would ever have guessed what a 6 months he had been through.
We have bit of a scare on the 17th, those dark sunken looking eyes; I try to put it out of my head. We get him to drink as much as we can, and by the next morning he looks OK. I guess that sort of worry will never leave us, it is something I guess all HD parents somehow do their best to live with. With no large bowel, he can dehydrate very quickly.
The 18th and we all have bad cold, and we are shattered, and all need some sleep and rest! We are still having the medicine fights, but he does have a lot of them, and maybe I would fight them too?
The week before Christmas is fantastic from a Matthew health point of view, we go for bloods on the 24th, and the hospital say they will only phone if there is a problem. At 5pm Christmas Eve, no call so we can now enjoy Christmas. Matthew goes to bed late, and every time he wakes in the night he asks “Is it Christmas now?”
Matthew wakes up so excited on Christmas morning. We all go downstairs, and his face is a picture. He looks at his pile of presents, and he walks around them again and again. He does not even open one for 10 mins. He loves parcels and wrapping paper. He is very happy with everything, especially his new bike. As the snow was still outside, he decided to ride it around the house!
Unfortunately, it is now my dads turn to be ill on Christmas day, so he and my mum have to stay at home and do not come to my sisters for Christmas dinner. We did enjoy ourselves, and Matthew had the time of his life. My brother and his wife were there and their daughter and her boyfriend, and my sister, her husband and the other 3 of Matthews adult cousins. He was the centre of attention! The video is of Matthew after Christmas dinner in his Buzz Lightyear outfit.
All of the family at the Christmas dinner and my parents were all due to go to Wales together between Christmas and New Year, we had to cancel this as my dad became worse and the emergency doctor came on boxing day.
We did actually enjoy our time at home between Christmas and New Year, we are usually all away in
Matthew is still not eating well, and is drinking 1 litre of Pepti Junior milk, mixed with 1 litre of dioralyte. Unfortunately most of this is at night, at least 1.2 litres! However, he is maintaining his weight, and fit and healthy. This does not give us much sleep. It also makes his stool and urine levels higher but he is getting vital calories from it. We really have to do all we can to make sure that Matthew does not need a new central line or TPN in the future. He now only has 80 cms of small intestine to absorb everything he needs to live and grow.
In January, we are very pleased. Matthew manages to be potty trained during the day, he manages nursery in pants! That is beyond our widest dreams. The problem though, and we are not sure if this will ever be “cured” is the night time stool problem. He goes on his potty before he goes to bed, and again when he next wakes. During the night when his body relaxes, then the stool comes out. It is such a shame for him, he wakes up at least once and he and the bed are covered. His stool is so liquid, it would be impossible to hold it in. There is also a large volume too. Our next challenge is to find a way for him to physiologically cope with this as he gets older. We are also investigating if there is anything that can be done to help, maybe if his stool could be thicker through different medication? We do not know, but you can be sure, if there is a way we will find it!
In reality we have no idea what 2011 will bring, but we feel certain that it can not possibly be as bad as 2010. There is always a niggling worry, and that is the same with all parents of children with any kind of ongoing health problem. We are so lucky to have had our family help and support us over the last year and over the last 4 years too.
We also have the help and support of all the families that we have contact with through the HMSDN group. Without this group Matthew would have had a totally different type of pullthrough! The support of other families who truly understand how you feel and what your worries are is priceless. With Hirschsprung’s, there is currently no cure, and no family knows what the next day will bring. As I write this, we have been discharged from hospital for seven weeks and that is the longest we have been out of hospital for almost 9 months.
Matthew will be 4 at the end of January, and they have been very worrying years, but also very happy years too. We would not change Matthew in any way, and I think we have all grown through this experience. I am pleased to say that whilst Ian and I have been close to breaking point, we have helped and supported each other well. Hard to believe but we have not had one single argument through all of these stresses. I am sure we have more stresses and worries to come too.
Matthew has a potentially life threatening illness and a very “secret one” in that no one really wants to talk about “toilet matters”. It is the topic in our family from first thing in the morning until last thing at night….and in the night too!
Let’s hope that one day there will be a cure for this very cruel illness, and that by the time Matthew and his friends have children then they will not have to suffer as they have. Unfortunately as it is rare some doctors have not even heard of Hirschsprung’s, and many of those who have do not know enough about it. We have been very fortunate to have a surgeon who recognised it immediately and was interested enough in Matthew to make sure he knew all there is to know.
Thank you for reading, I hope this helps some one in some way, and lets hope for a good 2011 for everyone who is reading Matthews “A year in the life of Hirschsprung’s”. Please help to raise awareness of this life threatening condition.