New member

[kathy oliver]

Hi! I'm new to the group. I never thought that my child could face the possibility of a trach but we may be close. Let me give you a little insight into my son Elijah. He is a 24 wk. preemie who is 5 months old and still in the NICU. He has severe BPD and has been intubated on a vent the entire time. He has been close to being extubated several times but the docs chicken out at the last minute. The big issue is with his CO2 reading which are anywhere from 80-100 regardless of the settings on the vent. They are FINALLY consulting a pulmonologist whose coming on Monday. I have lots of questions for her regarding nitric oxide, steroids (IV and inhaled), different types of ventilator modes/options, and heliox. Right now my son is being trialed on heliox. My son is sooo close to being extubated but for some reason it has not happened. Does anyone have any knowledge or experience with any of the treatments I described above? I know deep down nothing will probably help which is okay. I have already prepared myself for the possibility of a trach and home vent...I think, but would like some insight for those with preemies and on home vents. What's it like? What did you go through? Is it hard? Any insight would be extremely helpful. I hope to be armed with questions when we talk to the pulm. on Monday. Thanks Kathy

[cariaad]

Kathy, didnt I tell you you would get some good responses here? Im so glad you decided to try it. Everyone here can understand what you're feeling right now. And I agree that the best thing you can do right now is ask questions, questions, questions. Kope to be hearing from you again soon. Deb

[Lines dad]

Hi, Kathy
I'm dad to Line, also a 24 weeker, know 16 months. She was trached at 3 months and vent dependent to 5 months. Her major set back is a severe BPD.
The vent weaning we started to let her be off for 15 minutes and gradually increased the time on thermovent. Her O2 sup- port was in the range 0.5 - 2.0 LPM. The weaning took 1.5 month and she has been off the vent since then. We got her home at 7.5 months. She is still on continous O2 support (1/32 LPM) but we have started this weaning now, with a 2 hour record. Line's on a puls ox at home.
Her CO2 figures were also sky high, but the docs told her that she was used to it and compensated well with a balanced base excess. Line will have a G-tube surgery next week. For the trach, we hope for a late summer decannulation.

I can easily understand your situation having your dear baby on the vent, by remembering back one year. Hang on there and stay strong.

Jan, Lines dad.