New member

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