September 2010

We start the month spending most of our time at home, even though we have not been discharged. We have one day at the start of the month where Matthew falls asleep in the day, very unusual, and he is very lethargic. A night on TPN and everything then seems OK.  It only takes Matthew to be slightly “out of sorts” for my heart to sink and I start to plan for the worst. So, relief! It is such as shame he has to have the TPN, but it really is a life saver, and to a degree also gives us sort of comfort as we know when he has been on it for the night the next day is a guarantee of him being fit and healthy!

We go back to the hospital for the nights on TPN and for blood tests. Life seems to be getting back to some kind of normality and we feel far more positive about the future, and we no longer doubt whether the pullthrough was a good idea. It is lovely to be free of the never ending bag leaks and changes.

My mum had bought tickets for Matthew to go with us to the Science Museum in Manchester, there was a special visitor, Thomas the Tanks. Matthew was very excited, and we all had fun there, we actually went on the steam train, although it was only for about 15 mins, Matthew loved it. This was a great escape, and we knew that home “forever” was not going to be too long off. My mum cannot come with us as she goes into Christies hospital to have her thyroid “zapped”, and this means she will be considered radioactive for 3 weeks, so she has to stay in her home. Matthew is sad that he will not see her.

As I look at the picture above, it is hard to believe that he has been through so much, and can look so good!

Ian and I actually administer the TPN ourselves this week. I had forgotten how stressful it is. We have the added IV infusion to learn too as he will need this at home. We were lucky that the specialist nurses who trained us 3 years previously were still there, and it made the retraining a lot easier. They also knew us well by then, it was like having friends keeping an eye on us.

We clear out a room at home ready for the pumps, the fridge and all the equipment we need, a lot of space is needed for all the supplies too. It is a happy day preparing it, as it is a day closer to being at home. We pass the 100^th night in hospital, and that was never in our worst nightmares!

It is getting hard to get Matthew to sleep much at all, he is in his bed one night, and the hospital the next. We are all very tired, and in between times Ian and I both get bad colds and still have to go on regardless. We are relieved that we are no longer having to think about the Octeotride injections, the hospital agree that Matthews output was not being reduced whilst he was on them. The Co-amoxiclav seemed to be doing what was needed to keep it to a level that was acceptable.

Discharge planning meeting at home on 7^th September, with the specialist nurse from the hospital, our health visitor, and the community care team from the local hospital.

On the 8^th September Matthew should start back at nursery, but he has a bad cold. We hoped this cold would not have any other effect on him. Even though he was in hospital we were hoping he could go to nursery in the mornings. Matthew stool turned green on the 9^th, when he was at home, I dashed with a sample to the hospital. All was OK, it seems the antibiotics he had started were the cause of that!

The 10^th September, my birthday, and Matthew in hospital, but hopefully a few more days and we will all be home together. Discharge date 13^th September! We pack everything up at the hospital on the 11^th, and go back on the Monday to be officially discharged. We had accumulated so much “stuff” whilst we were there, and the walls were full of pictures, and windows full of stickers. We had made his bed area almost like a sitting room! We had been there for three and a half months.

The 14^th September and Matthew starts back at nursery, with no stoma! He is in nappies, and seems to be only passing urine in them. He saves his stool for the potty. Quite amazing! He is going to be there 5 mornings a week. That will be great for him and great for us to. We have been with him 24 hours a day for almost 4 months now.

Matthew is connected alternate nights to his pumps at 7 each evening and we lock him off at 7 each morning. It does seem sad to see him in his own bed connected up. However, we have a superb week and Matthew is well and back to normal. He soon settles into his own bed, and understands that he cannot get out of it for anything when he is attached to his pumps! Just one shout, and mummy or daddy are at his side.

He does not seem well on the 19^th and says he feels sick, he has no energy, his output is high again, and he is still not eating at all. Even though we are at home, we are still worried. In some cases it is harder and we have no one to ask to have a quick look at him. There is some piece of mind in the hospital! We are still having the medicine fights, and we are giving him 38 syringes a day, split over 4 times. He misses nursery as he is not up to it. We have a planned visit to have bloods taken on the 20^th, they suggest we put him on the TPN early as he does look as if he may dehydrate. Blood results in the morning show dehydration, so we go back for more tests, although after a night on TPN I am sure they will be OK, and they are.

On the 20^th the hospital agreed to put Matthew back on the Co-amoxiclav for 5 days, and see if his output comes down again. We are relieved as we are sure that it reduces his output, and it does. He will now take this long term, we will try to reduce the number of doses over the next few months to see if he can manage with slightly less. It has penicillin in it, and ideally this should not be taken long term.

The next day he is great, and we spend a lovely day in the garden, filling hanging baskets and being like a “normal” family. Great too, my mum comes around to see Matthew, he was very excited to see her, and kept asking her why she was not now radioactive, big words for a little one!

By the 27^th the hospital are ready to try Matthew with 2 nights together off TPN, and hope his bloods will be OK. They also hope it may make him start to eat? Apart from eating, everything seems to be going very well, and we are finally relaxing a bit, and are happy. Our only problem is a sore bottom, but with lots of cream, we solve that one too. It is something that we have to take great care of, if we miss even one cream after changing a nappy, then the skin becomes so red and inflamed.

All goes well, we go to the Lego discovery centre and have a good time, wow, this is “normal”. Urine tests show his potassium and sodium levels are too high in his urine, so we are dropping the amount we give him as supplements and more blood tests at the end of the month.

Matthew goes to a friends 4th Birthday party, and he has his face painted for the first time, spider man, he was so happy that day. He had more energy than the other children at the party and joined in all the dancing.

The month ends well, and we are full of optimism for the future. Ian agrees to do some work away down south for a week in October, so Matthew and I will be home alone. We feel like we are living in a happy “bubble” and we don’t want anyone to come along and burst it!