The day when we got worried

Thursday July 13, 2017

Clare and her partner have two children and her son David, now almost 13, has Obliterative Bronchiolitis. She looks back in this blog on when, as a single mum, she first became worried about David's health and the persistence she needed to get the right help for her son.

At the start of our journey into this rare and pretty much unknown world, I was a new single parent with a great family network around to help.

David first got poorly at 4 weeks old with his chest, but he soon got over it. Then he got a really bad chest just before his 1^st birthday: he looked so poorly on that day, but once again seemed to get better.

It was when he was 14 months old that he really got poorly, crying all the time with a high temperature; he just wasn't himself.  I was told to put him in a warm bath and steam up the room.  As I placed him in the bath, he totally screamed the place down. It was then I knew this wasn't just a normal chest infection.

I managed to get him settled and spent my night sleeping on his bedroom floor. The next morning, I took him along to our local A&E. They sent us home with some medication. The next day he wasn't any better and I knew something just wasn't right, so I took him back to A&E. This time they transferred us to the local children's hospital. We were seen there and given some more medication and an inhaler to try.

The following day there was no improvement in the way he was. I just knew something wasn't right and didn't want to just leave it to see if he would get better.  So I took him back to our local A&E and they transferred us to the local children's hospital (again) and we saw the (same) consultant.  After a while, they did agree to observe him overnight, but they didn't have any beds at that time. We then got transferred again but to the children's hospital in the town centre. Following some X-rays, I was told he had bronchiolitis and that I had been right to follow up my concerns.

It was strange and scary staying in hospital for the first time with David: we were in a room on our own. After being there for about a week, we moved rooms to one just behind the nurses' station to give me a bit more company for when my family couldn't visit. By this time I was living out of suitcases and getting very little sleep because of all the bleeping from the machines at night: one day just seemed to roll into the next. David had so many tubes going into him with different medicines, I just hoped that something would work and quick.

Our nurse was lovely and so caring. In my time of loneliness she became more of a friend as did some of the other nurses and doctors. Then one day after nearly two weeks of being in hospital David finally seemed to be picking up and even ate a little bit of a banana. We were all so happy and as our nurse finished her shift for the day she popped in to say she was off the following day and hoped we wouldn't be there when she was next on, because we would finally be back home.

That night, however, the night-nurse came in to check on us and spotted something in David she hadn't seen before. Everything moved so fast after that.  She called for the mobile X-ray machine, she called the on call consultant, she called the on call anaesthetist and I called my mum. David's lungs had collapsed!!!! He needed to go straight on to life support to help save him.

Looking back now at that time just over 10 years ago makes me cry.  I find it hard to think back to those early days of loneliness and helplessness.  We got used to hospital visits and tests now and have made some great friends along the way.  My baby's nearly 13 now and has been through so much and still has so much more to go through. Our family is now made up of four and not two: a stepdad has joined our journey now along with a little brother.

 

Have you had a similar experience to Clare and her family? If you need expert advice, Contact a Family have produced guides for Getting a Diagnosis, Living without a diagnosis and getting Support when you don't have a diagnosis. You can also ring our Freephone expert helpline at 08088 083 555, Monday to Friday, 09:30-17:00.

You can link up with other parents on our online community to share experience and advice. You can join the discussion about this blog or the group for parents' whose children have Obliterative Bronchiolitis.

Would you be interested in writing a blog? Email community@cafamily.org us your contact details and we will be in touch about how we can get your voice heard.