Severe RSV bronchiolitis

[Alice514]

Can anyone relate? My little one caught severe RSV at 8 weeks old which led to bronchiolitis and he ended up in HDU and was in hospital for nearly 7 weeks. He has needed oxygen ever since! We are pretty sure he had another virus before this. He is now 5 months old and on home oxygen whilst he recovers. He was born healthy at term and no issues prior to this. He is now needing oxygen to breathe, has chest recessions and is sucking in at his neck. Other than his breathing issues, he appears to be healthy , feeding well and thriving. He is recovering at home but we don’t know how long it will take for him to no longer need the oxygen. Doctors can’t find anything serious after Ct scan, heart echo, and several other tests. He is under constant review at the hospital. Has anyone experienced anything similar to this? We just want our little one to get better 😩

Look at 22q11 deletion. My dd was like this and later had a fish test, which diagnosed her.
It's awful when there so tiny.

So sorry to hear your little one has been so poorly. My 10 day old had exactly the same. Ended up in HDU. Had the most awful rash so had to endure lumbar punctures. Worst days of my life.
Didn't need ongoing oxygen, but hope it reassures you to know that he is now a strapping 9 year old. Sporty and on the go all the time!
Sending you lots of love and 💐. Hope he has as strong a recovery.

Not medically trained but a parent of a child with CLD. The oxygen therapies used can actually damage lung tissue (better to force the oxygen in than not!!). If he was vented the damage could be quite severe, even c-PAP at high volumes isn't great. If he doesn't actually have a lung disease then then new tissue will grow normally and it's just a waiting game for enough new tissue to grow to restore enough capacity to not need the oxygen. My son was on home oxygen until 9 months.

Ask the consultant to explain the last X-ray to you. The more you ask the more they tell you.

Hope he's ok soon.

was your son premature if you don’t mind me asking? yes we are hoping like you said it’s just a waiting game of healthy new lung tissue to grow and hopefully his breathing to improve.

@oneplus2is3

Yeah I had prem twins. He is 8 now and absolutely fine apart from asthma. We ended up in hospital at least once every winter with his bronchiolitis or later full on asthma attacks until he was about 5 and even now it's the first thing to affect him if he has a cold.