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Needing some advice

Posted Jul 31 2009 11:46am
Update: The RT came over and he's ordering the swivel connector, tendergrips, infant cannulas and pulse ox.  Her cannulas are too big and the prongs have to be trimmed back.  She's also getting liquid O2 for travel since her prescription is for sleep, sick or PRN.  Ava is terrified of the cannula.  I think she associates it with NG tubes. 


Original post:
Ava's oxygen came. Dr B (pulmonary/aero) refuses to use Apria so we went with Community Surgical Home Care. We have a concentrator, a lot of tubes/cannula, and a large tank on wheels as back-up. Tomorrow the RT is coming over to go over travel tanks, new pulse ox and other details. She's on 1 lpm (not sure if it's a high or low dose). Good news is that she no longer needs the sleep study next month since it was to see if she was having "true" apnea, which we now know she is. She's to use the O2 when sleeping and sick, this includes naps.

She's terrified of it. I need advice, please. I need to get my 15 month old un-afraid of it and to accept the cannula.

Dr C is out of the country for another 3 wks, but has been updated on Ava failed tests. We were all secretly hoping she wouldn't need airway reconstruction. Basically biding our time and praying she outgrows it. The plan is to try trimming the airway obstruction back (similar to the supraglottoplasty, but with minor laryngeal cleft repair also) to see if that helps at all. It's a fairly easy procedure that should only require a 1-3 day hospital stay. Not much more invasive than a T&A. Obviously there are still risks, like swelling (which is never good for malacia) and needing a breathing tube for a few days. But the main risk is increased aspiration. This surgery will not cure her malacia, but it may make her airway stable enough to bypass reconstruction until she grows more and becomes more stable. This reconstruction is often a 2 part surgery that can require up to a month in the hospital. I'm willing to try the smaller surgery and pray it helps. I hope I explained that right. Dr C would do this surgery and I completely trust him. This will be scheduled when he gets back in the country. As Dr B says, Ava has backed them into a corner and they have to act somehow. I really love Dr B, he calls personally and spends alot of time explaining things and answering questions. As Alicia would say, he fights for Ava. The Cincinnati team has been a godsend.
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