Skye's Trach....

I am so done with Skye's trach. Anyone who knows us knows that the trach is out more than its in.  She has been off the vent and CPAP for ages now but due to her issue of scarring and stenosis from repeated intubations, she couldnt have it removed without a bronch to check her airway looked ok.

She had her trach capped for a month and an overnight sleep study showed she was ok without it, so we thought GREAT finally we can get it out. Of course, her bronch showed that there was still a little stenosis (part of her airway is a still narrow) so to be on the safe side we should keep it in and look again in 6 months..... We had been counting the days to the bronch and trach removal as over the last few months Skye has become an expert and removing it. Here's my dilema.... If i leave it in but uncapped with no HME it gets blocked solid by what looks like boogers that her suction machine wont suck up, so I have to remove it, poke out the 'boogers', wash her trach and put it back in, so I am decannulating her about 3 x a day for 20 mins at a time. The benefit of this is that she cant decan herdelf so easily but she can and does put things down her trach, like grains of rice (not kidding). Alternatively I can put her cap or HME on, but they last no time at all, especially the cap, its usually in her mouth, under the sofa, in Henley's mouth, or she uses it to decann by pulling it and her trach at the same time. I have tried putting her ties super tight, and she decannulates by putting her thumb at the base of the trach and flicking out the tube......

Her record to date was 27 decannulations in one day - and sometimes I dont even see right away. Surely that is a major potential for infection??? also what about damaging her airway more???

Heres a clip of her with no trach, as you can see it doesnt bother her....

Here are a couple more pics and Skye feeding Henley.....



No trach



my tarzan