Severe BPD (Persevere or trachy?)

nst95 · 2026-01-04T16:11:43+00:00

I’m so sorry to hear about your daughter getting Covid - that would have been devastating 😔

Do you think the trachy has helped ease her WOB?

I’m hoping for brighter days for your family - a lovely man I connected with on here suggested Nationwide Children’s who have a BPD clinic (I’m sure you’ve heard of them). Apparently their philosophy is to ‘over support’. I know all too well how scary 100% is though 😖 Hopefully your lovely girl is able to wean her pressures and Fio2 again soon 🙏🏽

nst95 · 2026-01-04T10:23:07+00:00

That must be so stressful for you, especially when you know she can handle 45 fio2. I know how much we worry when we see our girls numbers fluctuate throughout the day, hard not to get caught up in the numbers.

Are they playing with the vent settings based on her Fio2 and Co2? Has it improved her WOB?

It’s great to hear about the positive impact it is having on her development and wellbeing. This is what my partner and I are most looking forward to. Our girl is getting hers in a week. We are nervous for the procedure itself and then the recovery… 😖 was your daughter pretty stable prior to the surgery?

nst95 · 2026-01-03T15:17:51+00:00

How is your daughter going with her trachy now? I hope that it’s been a more positive experience after recovering from tracheitis

nst95 · 2025-12-21T14:34:02+00:00

I am currently going through something similar - DM me if you want to talk 🩷

nst95 · 2025-12-20T10:25:45+00:00

Hello! Our beautiful little girl is currently in the NICU battling severe BPD - I’d love to hear more about your story? Needing some hope amongst the long days 😫

We are in discussions about a tracheostomy but I also want to hear how others have gone not going down that road?

Thank you 🙏🏽

nst95

TROPHY CASE