Bronchopulmonary Dysplasia

I felt the need to update this lens.

Since the beginning of this year, my son's lung function has deteriorated quite dramatically, and we're coming to the stage now where there is a confirmation that Bronchopulmonary Dysplasia does come back to haunt it's young patients.

I want to say, if your child had this during their early years, particularly to the extent where they were oxygen dependent, please make sure you have at least yearly check-ups with professionals in this field, so they can keep an eye on things.

Where David was one of the earlier patients, things were all still so new, so I guess they're learning from him as much as we're learning from them.

We were so used to David being ill, with so many different things, that I think we had rose coloured glasses on when he was finally released from SCBU. It was the most amazing day; we had no idea the time he would spend at home, with us, at this moment, would be under 48 hours. He was fine for the first day, feeding well, albeit slowly, and making a slight grunting type noise when he exhaled. Other than that, all was well, and we thought nothing of it, as it was nothing new from when he had been in hospital, the coveted 'end room' for the last three weeks.

My, how this all changed. By the afternoon of the second day, there was a wheeze, a real wheeze where it could be heard from the other end of the room. We had been given a 'green card' by the SCBU that we could use if we were worried, we could go straight to them and they would make us feel better, or so we thought.
We arrived, and the Consultant had a look, had a listen, wired him up to an oxygen monitor. His SATs were 73%. A flurry of activity and just a few minutes later we were in a side room, and David was being hooked back up to oxygen. the Consultant took us to one side and explained that David was suffering from RSV (a very bad, infantile, lung infection) and was being admitted.
We were heartbroken.
Strangely though, a week later he was released, only to be back in hospital just a few days after that with the same thing. They then decided to look further into what may have been causing it, and that's when we were informed it was BPD.

This stay would be an extended stay while all the plans were put in motion.
Firstly, David would need two carers; so my hubby, Mark, gave up his job.
Secondly, our home would need to have equiptment installed to sustain David's life, an oxygen generator was installed, and pipework with little green taps in every room David would be in popped up everywhere. Three oxygen cylinders were delivered in case of a power cut, and two portable ones for day trips out.
Oh, and a massive bag of cannulas and snot pots.

We were ready, and David officially became the first oxygen dependant child being nursed at home.

I kid you not, it was a struggle, but it was lovely to finally be a family unit. Everyone became aware of monitors, wires, tubes, cannulas, and 'snot pots', and the BPD had made him so weak we had to learn how to pass and change an NGT (naso-gastric tube).
As he grew older, we noticed differences in his skin colour, he would go from pink to a slight grey and we knew he would need more oxygen, or would need his airways cleared. He was also constantly wired up to an O2 monitor, a light would shine through his finger and tell us how much oxygen was getting through to his blood .... we called it his ET finger; funny how you think up harmless names when medical equiptment invades your environment! He learnt to crawl, was never expected to walk due to other problems, and he learnt, surprisingly quickly, that if you turn too many times, you end up swamped in tubing!

Over time, as he got older, and with the help of the steroids, he became less susceptible to the chest infections that kept thwarting him. We still had hospital stays, but not as prolonged as before and in the general ward, not the high Dependency side room.

Sensibly enough, he was assigned nurses whose other patients would be children with stomach complaints, and, touch wood, hasn't had a stomach bug since he was seven years old! We believe this is because he probably developed some kind of immunity from being permanently exposed to all these different viruses. Every cloud has a silver lining :o)

The good news is, even though there is still significant lung damage, as he grew, and had the right treatment at the right time (oxygen, steroids and antibiotics) a substantial amount of new tissue has grown and now has become larger than the damaged areas. This was better than we could have hoped for, and, generally speaking, he now leads a relatively normal life. we still have an oxygen cylinder, and cannulas, just in case, but have a feeling they won't be needed anymore.