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 1st 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.
Written by
Alex Greaves
at 13:27