John Stordard

John with Mum & Dad - Glenda & Micheal
John & brother Natham 12th Sept. 1998
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John having fun 12th Sept. 1998
John with Claire McGregor

John's Story

Dear friends

This is our story about our baby John born 22.11.97

Well thank goodness that’s over were my thought at 12.07am on the morning of 22.11.97. The baby is here at last, a little boy 7lbs 8ozs. All looks well has 2ozs of bottled milk and go to sleep

Tried to give John a bottle in the night but he just wants to sleep and so I wait until morning, still 22.11.97. About 6.00am I try to feed John again, he has about 2ozs again but not interested and is sick about 5 mins. Later change him and put back into his cot no dirty nappy yet, told not to worry it will soon happen. About 10.00am I try to feed John again is not interested has some and is sick again. When nurse comes over I tell her she says you have a baby that going to be a sick to start with nothing to worry about. Change his cot again this goes on all day still no dirty nappy. The same all night still no dirty nappy. Sunday morning still no dirty nappy still told not to worry it will happen later in the morning they show me how to bath John I told them again still no dirty nappy. Baby doctor comes to see John told we could go home. Bring baby home still no dirty nappy. Monday midwife calls, tell her still no dirty nappy she says some fresh orange. Michael go to buy some oranges told this would be better than the cartons. Still no dirty nappy, still being sick and not having much milk. This goes on all day and night again. Tuesday is the same, Wednesday John is not very well at all this morning.

When the midwife comes, she phones the hospital and we are told to take John back into the special care unit. Here, they put John into an incubator and put him on a drip to get some fluid into him. We are told he is a bit poorly . We still didn’t know what was wrong, was it something I had done? But all I had done was sit for hours trying to get some fluid into him. John had drips and monitors everywhere my poor baby. John had so many blood tests he looked like a pin cushion. We left John in hospital about 6.00pm for the night they said I should go home and get some rest and they would ring if they needed us. We didn’t get much sleep that night. Thursday morning we arrive at the hospital about 10.00am. John looks a lot better this morning because he had some fluid in him. The doctor comes to see us and says they want to x-ray John to see if his oesophagus and stomach are in the right place. We go for a coffee, when we get back we are told "yes they are fine". A little later the doctors come back and say that John will need another x-ray from the bottom up to see if everything is in place. Everything is in the right place again, still don’t no what wrong. John is still having blood taken from him still no dirty nappy. John has now having green vomits he is green from top to toe and it stains. About 5.00pm a student comes into SCBU for a look around and asks one of the nurses what is wrong with John, the only new baby since he was there last. She tells him they don’t know. He tells her it sounds like he has HD. I don’t think we should have heard this, within 5 mins of him saying this there were doctors everywhere. One of them put his finger into John bottom there was green stuff everywhere and suddenly letters where being written and we were told John is being sent to Oxford to see if he had a bowel problem. By now it was 7.00pm John was to go in a ambulance and we were sent in a taxi. We only had the clothes we stood in with us and Oxford is forty miles away from home. When we are nearly into Oxford the taxi driver ask where do you live in Oxford we tell him he is taking us to the hospital where they are taking the baby he know nothing about it. Michael says try the John Ratcliffe but there are about 10 hospitals in Oxford. Luckily Michael was right but where was John by now? It is about 8.30pm, John had been taken to the ward and had not been put on the computer. When we went to look for him, about 10mins later we were on our way to the ward to find John in a big cot covered in blankets to keep him warm. His nurse Lucilla, told us it looks like John has HD. We had never heard of this and she explained it all to us than a doctor come to see John put another finger into his bottom and the green stuff was everywhere again. He said it looks like John has HD and said they will be doing a biopsy the next day to make sure he was right and we had nothing to worry about he can be treated but wait and see our poor baby.

Friday, John is now 7 days old. They do John’s biopsy about 10.00am and we are told about 1.00pm that John has HD and he will need a operation on Monday morning unless he gets worse over the weekend then they will do it sooner. Later Friday afternoon we are given a photo album to look at, it is full of babies with stoma and plastic bags on they tummies inside these bags it looks like they have a little rose bud waiting to open. The little girl in the next bed has a stoma but the family didn’t speak any English. I couldn’t ask her any questions. The stoma care nurse came to see us and had a chat, things were looking better all the time. John had to have his bottom wash out every 6 hours over the weekend I helped the nurse to do this each time. They were very good about me helping even though they were very busy

Monday morning arrived all to soon but not soon enough if you know what I mean. The time arrived for John to go. I wanted to go with him but couldn’t so Michael went with him. I don’t know what I would have done if he hadn’t been there with me he was so strong. He didn’t sleep for 8 days in case the nurse came to get us. Well what a long day Monday was, John come back looking much better with a rose and a bag on his tummy.

Tuesday. The stoma care nurse come to see us today with John’s little green box. Yes it was green with all his stoma care bit in it and showed me how to put on a bag well. I was all fingers and thumbs to start with but it got better all the time. A few days later John was starting to have a bottle of milk well 2ozs then 3 each day got better and we finally took him home on Sunday night.

We were told John would have to keep his stoma until he weight about 20lbs or 10kgs or be about 1 year old what ever came first. Well John went from a poorly baby to 18lbs in 7 months. I got better at putting on his bags I had to if I didn’t get it right what a mess and I had a few. We have a great stoma care nurse Beryl. Well John reach his weight in 7 months and off we went again to Oxford. We had waited for this day since John was 9 days old. I didn’t mind the bag at all, some people had a problem with but I didn’t. Wednesday June 24th arrived off we went. We had to be in Oxford for 10.0am, we arrived at 8.00am and off to the ward we went at 9.00am. They didn’t mind that we were early. John had a check up all was well. And they started to get him ready for the next day, nobody got me ready for what was coming next. John had to have his bowel washed out, that’s all right he had had that before wrong. Yes, he had his bottom wash out but not like this. If any have nearly changed their mind at the last moment I nearly did. Poor John, again he had to have 3 litres of clean prep so they were no pooh in his bowel. 3 litres when in but I would say 10 litres came out. The bags wasn’t big enough for all that liquid, so it had to be changed every hour or so. Then I couldn’t get the bags to stick because it was so wet. In the end one of the nurses made up bags with a tube in the end the tube went into another bigger bag then that made life better for John for the time being..

Thursday June 25 the big day we say goodbye to the bag. John went off about 11.00am, what a long 4 hours it was. I wasn’t worry this time, I knew John was in good hands and it what we had been waiting for so long. When John come back to the ward he didn’t have a bag he did have a long plaster. John could start to have some fluid the next day, then we went on to milk, then food and we haven’t looked back with the eating yet some thing make him very loose. Well, the next thing that happened was the nappy rash and all the nappies you use, it was one an hour to start. When John had his first pooh from him bum I was so pleased, now I just remind myself what it was like waiting for that day. As for the nappy rash well what a rash it was red sore and bleeding at times the only thing that works for John is not to let him stay in a dirty nappy for to long and I use orabase paste we get this from the G.P.

We are now waiting to see what will happen next?