Spare Bivona Flextend Pediatric 4.0?

gemmasmom · #1 02-26-2011, 09:11 PM

Thanks for all of your advice on trachs. We are going in to see the trach clinic next week but I think they are going to decline our idea to go back to a flexible trach because of Gemma's last bronch. However the last trach was a neonatal and she now fits a pediatric. I am frustrated watching my daughter struggle with this new trach (Arcadia - regular trach) because it pushes into her chin, it is hard to get on/off for suctioning, it catches her skin, and also not the safest when I am alone and needing to bag her. I get frustrated when the hospital doesn't listen to us parents who know best.

So if they decline us I am wondering if anyone has a spare Bivona Flextend Pediatric size 4 trach they could give us or sell to us?

Thanks!

jarner79 · #2 02-26-2011, 09:24 PM

Do you have a regular ENT doctor instead of the hospital? I wish I could help you but my son wears a 5 custom flex length. Is she on a vent all day? If not you could say a flex is needed cause she blocks her airway with her chin? That's why my son has the custom flex. He has poor head control.

gemmasmom · #3 02-27-2011, 11:56 AM

Gemma has a ventilator so it doesn't occlude her airway but it does affect a lot of other things that are causing her discomfort. It is also difficult if she needs bagging when there is one person because of the angle and having to hyperextend her, so that is a bit of a safety issue.

We called ENT but they don't really want to be involved because we are with the trach clinic. I'll speak to them this week but I'm worried they will just say what they did last time. 'Most kids are on these trachs'... 'It just takes getting used to'...

Thanks for your help,
Amanda

jarner79 · #4 02-27-2011, 09:34 PM

Well yes that is a safety issue. I wouldn't let them not allow it. Try telling them you had to bag her while alone and it was very hard with the new trach. Just be pushy and firm with it. If they say get used to it, tell them no and just keep pushing it. If it still fails then say you want a new doctor to come in for a second opinion?

gemmasmom · #5 03-05-2011, 01:20 PM

Thank you for your reply. A wonderful friend of mine has a child that ironically and luckily has the exat trach we need so we are getting a few from her. I am meeting with the team on Tuesday so I will tell them that I want to at least try it!