Severe BPD

Babies like that are really, really difficult. Yes, some do die with respiratory disease of that magnitude. Some just have a long, long road ahead.

Have your doctors tried such things as Nitric oxide (a vaso-dilator) to help the baby oxygenate better? We have had really good success with BPD babies on NO. Ditto viagra, which has quite similar properties, and does not cause erections! lol What about diuril and aldactone? Beta-methesone?

He may just need to stay on one oxygen regime for an extended period without any change until his lungs can improve a bit more. We did have one baby in our nursery for two years, and he went home on a vent, but he is still alive at age 13.

Dawn

Does he have PPHN? That seems to be what does most of the long term BPDers in We have had a some do well on viagra, others no matter what we do, they just can't make it. We have had kids up to a year old with us that die. The ones that are neurologically okay and have bad lungs are the ones that break my heart the most.

Have your doctors tried such things as Nitric oxide (a vaso-dilator) to help the baby oxygenate better? We have had really good success with BPD babies on NO. Ditto viagra, which has quite similar properties, and does not cause erections! lol

Dawn

Sildenafil SO gives kids erections! It seems like I have a surprise waiting for me at each diaper! One of our kids actually grew pubic hair and a thin mustache about 2 weeks after starting it. I thought it'd be from the prednisolone or something, but that was the only new med that had been added in a while.

While being on CPAP/Vapotherm isn't too great for 8 mo old (~4 mo corrected?), it could be worse...We have a handful around that old, some older, who are still connected to the vent with their trachs and pretty high pressures. Sometimes we extubate to CPAP of 10 (yes, TEN!) if they are borderline with their gasses and of course they fail, but I guess you have to try sometime...Has anybody done a bronchoscope to see if maybe there's a structural reason why you can't wean past a certain pressure?

Texas2007--Sildenafil SO gives kids erections! It seems like I have a surprise waiting for me at each diaper! One of our kids actually grew pubic hair and a thin mustache about 2 weeks after starting it.

Wow, I've never seen that happen. One of my past primaries was on it from late Spring until he died in October and I never noticed erections--or secondary sexual characteristics. I used to claim that baby was from a different planet where they breathed Nitric Oxide instead of 21 percent Oxygen because he was on NO and viagra so long.

Dawn

He as very mild PPHN and they are trying Viagra. They can't justify NO because his PPHN was too mild. Though, I have seen it work on a baby via nasal cannula. He is on all the diuretics. The last time they tried to wean those he ended up with loads of fluid in his chest.

NO usually won't work w/ CPAP anyway... something about the mechanics of it all. (We also don't wean any diuretics on chronics like this until they are off of oxygen support- or close enough to it)

Your description of the back and forth from vapotherm to CPAP reminded me of one of my former patients.

This last weekend at work I found the box of pictures we keep of our patients, almost exclusively ones parents send us once the kids are home or pictures from the reunion. Then I came up on a picture someone in the unit had taken of this little girl we had. She had a huge smile on her face, she had been there so long she actually smiled on purpose. Her parents were not involved and all the kindness she knew was from us. Had the most severe BPD any of our neos had ever seen with a 32 weeker. She was almost home (not with her parents) when she suddenly developed PPHN & cor pulmonale. Nothing worked. There wasn't a name on the back of her picture so I wrote it there. It killed me to think that in a couple of years no one would remember who that smiling baby was.

But for the most part kids like her, lung kids that go back and forth forever and stay for many months usually go home, though occasionally they require trachs and home vents. I'm sure these kids struggle for years with lung issues.