The hospital bubble

When your child is in hospital it becomes like living in a bubble. It is as if the world outside has stopped and there is nothing else but that hospital ward.

Firstly I want to say how amazing all the staff were on the children's ward. Every single person we met was so supportive and kind. We were given tons of information, none of which I could retain for more than a few minutes, yet they patiently went over everything as many times as we needed. Hospitals get a lot of criticism these days but our experience at Barnet could not be faulted.

We met a few people who would become part of our lives for two years, and some who we only saw that week.  I want to thank everyone, because though it was the worst week of my life, the staff made a huge impression.

It was well past Jake's bedtime by the time he had been settled on the ward. Someone realised he would need supper and brought him some sandwiches. He wanted milk but we were told it was too high in carbs at that time. Second food lesson; milk has carbs- who knew? I think someone must have given me food too, whilst David went home to get a bag of clothes and wash things for each of us. Fortunately I had let Jake bring his precious soft toy horse with him to the walk-in centre. I never normally let horse out of the house for fear of losing him; had I had a sixth sense Jake would need him?

That night I was going to stay next to Jake on a surprisingly comfy camp bed. David went home and Jake went to sleep and I started phoning people. I phoned my parents, I phoned my brother and sister. My sister was brilliant- she also has a son with a chronic condition, now happily out grown, but she understood at once, even though I prefaced the conversation by crying down the phone.  I phoned the Nursery- well the head-teacher -who is a friend, as I knew Jake could not go back to Nursery until the staff had been trained. I phoned the childminder who had the right to say she could not manage Jake ,but instead, was truly magnificent in her response and told me I never should have doubted her and when could she be trained?

I sort of slept on the camp bed; I did a lot of silent crying and wishing that it was all a bad dream. Jake did manage to sleep, even being woken to have his blood pressure and blood sugar monitored did not stop him from sleeping pretty soundly. 

Amazingly we both slept till gone 8am. The ward was surprisingly empty and there had been one admission during the night, a charming 8 year old boy with asthma. The 8yr old was clearly a regular and he supported Jake the entire time we were on the ward. Despite being unwell himself he had the maturity to realise Jake was frightened and angry and he showed him around and played with him when he could. I made the point, once we had left the hospital, of phoning his school and telling them what a credit this child was to them.

Breakfast was a whole new experience. It revolved around blood tests and counting carbohydrates and I understood none of it. The staff supported me but I felt as if I'd slipped into another world and could take nothing in. In fact the only information I retained from those early days, was that carrots were a good snack as they had no carbs. 

David arrived with fresh clothes and Jake played. Despite the fact it was January we all needed fresh air and so went to the playground outside on the roof (which I believe has now had to make way for an extension) The climbing equipment was fabulous and Jake loved it. He was also the only child well enough to use it, or any of the other toys available.  

My sister turned up and took me to eat lunch in the hospital café. She was amazing and supportive and tried very hard to be really positive for me. The grandparents also turned up- though their anxiety and upset was not so helpful. I do know they could not help being desperately unhappy; my mother has a friend whose granddaughter also has Type 1 so she knew very well what it was all about. They all brought food for the adults- a good thing too or we might not have eaten.

That night it was David's turn to stay in hospital and I went home. I thought it would be good to go home, have a bath and feel human again- it was the worst night I've ever experienced.

The diagnosis

It was a Saturday; of course it was- children are always ill on the weekend. We had to go to the local walk-in centre, sent by the NHS helpline. Had they realised from the list of symptoms? Possibly, but they did not worry us but just encouraged us not to ignore it and to take Jake to the local walk-in centre.

Even with an appointment we waited quite a while. It was late afternoon and very busy, lots of unwell children. Jake was not that unwell at this point and I did feel perhaps we were a bit hasty bringing him in. We saw a lady doctor; I can't even remember what she looked like. All I know is that her manner was slightly brusque and she made Jake do a urine sample and she took blood, which made him cry. Then she said something I will never forget and which makes me wish she had done some training in how to break news to parents.

"He's got diabetes. It's an emergency, go to Barnet General now. Here is a letter to give to reception."

I'm not sure how David drove to Barnet. I was sitting in the passenger seat crying and praying she was mistaken. I knew nothing about diabetes, only that I did not want my son to have it. When we got to Barnet there was nowhere to park. It was dark and cold and we drove around a few times with no luck. So I got out with Jake and went into A and E whilst David drove around again, finally finding somewhere. I have no idea if he paid for the parking; neither of us were in a state to even think about that. (We did not get a fine, so either he did pay or no-one noticed!)

It was Saturday evening and the waiting room was full of quite unwell babies. I remember looking at them and thinking how many unwell babies their seemed to be that night. We went up to the reception desk and handed the receptionist the letter from the walk-in centre. Within moments we were being ushered into the cubicles. It was at that instant that I realised how serious it all was; on a busy Saturday evening to be jumped ahead of everyone, you suddenly know this is a life changing moment.

More blood tests (more crying though they were more gentle than at the walk-in centre) Then the very young doctors, two of them, came to talk to us.

"It's good news," the young man said. For the briefest of moments I thought the doctor at the walk-in centre had got it wrong. "We've caught it really early, he shows no signs of organ damage. We will have to admit him though and monitor him."

I can't even remember going upstairs to the children's ward. All I can remember is several people holding a screaming Jake down in order to give him his first insulin injection.

In the beginning...

...I knew nothing about carbs and very little about the processes involved in digestion. But then I became the parent of a child diagnosed with Type 1 Diabetes and suddenly I had to learn everything.

It's been five years since that day. Jake had all the signs, except I did not know what they were. In the December he began to complain he was feeling really tired , but of course you do not take your child to the doctor because they are tired. We are real foodies in our family and we went to a food show that December. There were lots of samples, including fudge and chocolate, the sort of things Jake rarely ate. He got so tired all he wanted to do was sit down and watch the ladies singing in 1940s costumes. But he wasn't ill, just tired.

He lost weight, so much weight that when I look at photos at that time I wonder how I could have missed it. He was only four and he was growing like a beanpole so I just thought he losing the baby shape and getting taller.

Then there was the week he was ill. He had a coldy, flu type thing and he was really run down. My lovely husband rushed out and got oranges to make Jake freshly squeezed juice to give him a bit of energy. David still blames himself for exacerbating Jake's condition, except I think it was probably what helped diagnose it more quickly that week. What I know now is that that orange juice was about the most potent blood sugar raiser Jake could have been given. My first food lesson; orange juice raises the blood sugar

Then Jake started drinking gallons and going to the toilet every five minutes. He even went back to wetting the bed. He was drinking so much the Nursery staff noticed though even that did not trigger alarm bells. It was the following Saturday and he was still unwell, this time complaining of a stomach ache. He told me he'd had 'tummy aches before but nothing like this one.' It was then I said we needed to phone the NHS advice line, though I thought he might have a urine infection. Diabetes never entered my head.