ericnrosesmom
04-17-2009, 11:43 PM
As many of you may know, Eric's sleep study last month didn't go as expected. His previous one last November showed that he was borderline to be able to sleep without the vent (he's been off it while awake since last summer). The study in March had resp rates between 40 and 60, mostly in the 50's. Also a bunch of apneas, I forget how many. Anyway the pulmo thinks he likely has scar tissue or some form of malacia and decided to do a bronch. If they do see something, then we start deciding how to go about fixing it. However, I asked her what would happen if they didn't see anything out of the ordinary. Her response was "if there's no blockage then the problem is neurological, and nothing can really be done about it." Which as I understand it means he'll always have to sleep with a vent, which in turn means he'll never get rid of the trach. At the time he got the trach (a year ago last September) consensus was he'd most likely be rid of it by age 3 or
4. I'm trying really hard not to borrow trouble. I think, and most ouf our home nurses agree, that the vast difference between the Nov. and March sleep studies means that most likely the blockage developed during that time. If there is a blockage and if it can be removed, I'm hoping we can start weaning off the vent at night and maybe within the next 6-12 months get rid of the trach. I never thought I'd be in the position where I'd actually WANT my son to have a blocked airway, but in this case it's actually better lol. Please pray for a simple problem that can be easily fixed and lead to eventual decan, not a permanent trach.
4. I'm trying really hard not to borrow trouble. I think, and most ouf our home nurses agree, that the vast difference between the Nov. and March sleep studies means that most likely the blockage developed during that time. If there is a blockage and if it can be removed, I'm hoping we can start weaning off the vent at night and maybe within the next 6-12 months get rid of the trach. I never thought I'd be in the position where I'd actually WANT my son to have a blocked airway, but in this case it's actually better lol. Please pray for a simple problem that can be easily fixed and lead to eventual decan, not a permanent trach.