Sunday, 23 January 2011

October 2010

All is well, we go to see Postman Pat Live at the local theatre, and Matthew really enjoys it. We had promised him so many things when he was in hospital, and this was one of them.

Matthew decides now that he does not want a wet nappy on in the night, so every hour he wakes and screams for a dry one! So, we are up even more than usual! I think his bottom is sore, and the urine is hurting it. We are getting very tired now. It is hard enough doing the TPN, and the medicines, and the fights on the potty, and all the milks in the night, this is almost polishing us off. We are so happy to be home, but we are sleep deprived.

He is at nursery 5 mornings a week, and so we do get a little time for a break! He really is looking and seeming well. How, on almost no food, and little sleep?

Ian goes away to work for the week, so I am home alone with Matthew. It is a good sign though that Ian can leave us. I do the TPN, and my mum and my sister come round to occupy Matthew whilst I set it up. It seems a bit more of a responsibility when I am on my own.

We manage a 6 hour urine collection, so he went to nursery in pants one morning, his teacher was very good, and managed to collect it. He was also good and he managed to know when he needed to go!

By the 6th his weight and height are on the 50th centile, brilliant, so the hospital now suggest trying only 2 nights a week on TPN when we get home from our holidays. We had booked a week at CentreParcs, when we thought he would be home by September, it was the third time we had moved it. It now looks like we will go, with all the pumps and TPN!

The 7th is the hospital dentist appointment. Matthew had 10 teeth taken out last year. They were rotten, mainly due to all his medications. I am now worried about his two remaining top 2 incisors, they have holes in them. We wait for 2 hours as they are running late. Still, relieved that they do not need removing, but need filing. They decide to do this gradually over a few months; they can see how scared he is of any one medical being near him. So here we go again, an appointment every two weeks for them to work on him! We are destined to be attached to the hospital for something! Still we have a holiday to look forward to.

He goes to an activity centre party on the 9th, brilliant. It is so good to see him running around without a care in the world. He has no stoma to worry about coming out, and I also don’t have to worry about bag leaks!

The 11th and we are packing up a car load of our belongings, plus pumps and all we need for the TPN. The TPN will be delivered to CentreParcs and they are giving us an extra fridge for us to store it. We arrive, and all is great! Matthew is connected to his TPN by daddy, great! Hard to do when you are in unfamiliar surroundings, and have to be sterile too!

The holiday was simply fantastic, Matthew went to a teddy bears picnic, and saw Rupert bear, we went out every day and the weather was dry.

He loved having the bike we had hired, and he went every where on it.

The only thing we decided not to do was go in the swimming pool, we were worried he may get a line infection there. He went Tenpin bowling, and had a great time in all the soft play areas. He was singing as he went around all week. He was so fit and healthy. Even though we had the TPN, it was still a great time. We all relaxed and it was great knowing we were going home to only 2 nights a week on TPN. There is an underlying stress, but we keep on top of it!

The next week or two are good, Matthew makes it to nursery every day, and Ian and I actually go to Ikea on our own. What an outing!  It was so good, just the two of us.

Life seems good, and we are slowly starting to really believe that we have come though the worst.  Only 2 nights TPN, wow that is great! Would be perfect if Matthew slept all night, but we can’t have everything!

Matthew goes to our local hospital on the 20th for his MMR booster and his flu jab, apart from being frightened all goes well. The immunologist gives then to him on both sides at the same time! 

We decide to go to Wales with my mum and dad on Oct 21st, all seems to be going so well, and we wanted to go and see the sea and have time somewhere different! We now felt free! We went out for meals with Matthew, and he would eat half a chip! How he kept going eating so little? He was drinking a very large amount of milk day and night. As this seemed to be keeping him fit, we did not want to change anything! We go home on the 24th and everything is great.

The 26th brought an awful time. Matthew was connected to his TPN at night, at 10 in the evening he started to be very sick. We took his temperature and it was 38.8, far too high. We knew something was wrong, and feared the worst, a line infection. They are more likely to show when they have just been connected up as all the infection is pushed through the blood stream. The line goes into a main artery that is why being sterile is so important when he is being connected and disconnected. Yet again, off to A & E, by the time we arrived his temp was 40 and he was very sick. He is admitted to the ward, and all he wants is someone to sit with him. He is very poorly. They start him on IV broad range antibiotics and take blood cultures. They can’t treat it accurately until they know the exact bacteria. It can take days before they know.

We knew that this would be more than a few nights in the hospital as Matthew had line infections before when he was a baby. They are very dangerous and can be life threatening. It seems hard to believe that we are so unlucky just when he was down to 2 nights a week TPN. The next stage would have been no TPN, and see how his weight and bloods go. He is really sick and we are very worried.

The next few days are awful and he just lies in bed, and almost does not want to talk to anyone. We have never seen him so fed up. His temp is spiking as soon as the paracetamol wears off. He needs an IV antibiotic every 6 hours, we learn how to do this. Time wise this is difficult as we have to actually do it 3 times to be signed off, one for each of us was 4 am in the hospital, very tiring.  If we chose to let the nurse do the 4am one, then it would take 6 hours longer for each of us to be signed off! We wanted to be able to get home as soon as we could handle everything ourselves. The first time I tried it, I pulled back the syringe to remove the alcohol line lock, and blood came back with it, it was awful just like taking your childs blood. Although Ian actually did take bloods in the end to speed up what was going on in the hospital. We were doing almost anything we could to get Matthew home again.

By the 28th he was much better and played in the playroom, they had identified the type of line infection, and decided on the exact antibiotic. His temp has been OK, and if Ok the following day we could go home!

We have to go back to the hospital each day for the hours antibiotic infusion. This one is too complex for Ian and I to learn.

By the end of October we are home! It is a real struggle to do the IV in the night at home, it is better two handed, so we are both up and scrubbed up to access his line at 2 each morning. The other ones in the day do not seem too bad as it is daylight hours. The frustration though, when the hospital one runs late for any reason, then the 6 hours moves out my the same amount of time, and we really want him to go to nursery in the morning after an IV. The timing of the 6 hours is critical to him being home at the time he needs it, and not at nursery. May seem a small thing, but we really wanted him to have a bit of “normal” at nursery.

A big decision was also made at this time, we would try to see if Matthew could manage with no TPN at all. If he could manage to keep his electrolytes in balance, and at least maintain his weight then he may not need it. We were hoping and praying that this would all go well. It would mean that the central line could come out in a few weeks time. The line was left in and they were trying to save it, but was it really needed for TPN? It was being used now as he needed it to clear the blood infection, and the IV had to go through it. We were hopeful, but not very confident as Matthew was still eating little or nothing at this time. How would he be able to even maintain is weight. Only time will tell!

All seems to be well, and Matthew is so much better. We just have to give the IVs for 2 weeks and all should be OK! We end the month optimistically.

No comments:

Post a Comment