I have no idea what is up with Kiera today. I swear she was WONDERFUL yesterday and this morning having finished her 5 day steroid burst Saturday morning. We even had her down to 2 1/2 liters of O2 yesterday and this morning. We went for a long walk with the stroller yesterday, although the last 1/4 mile home was all uphill, and Kiera's fully loaded stroller must weigh at least 60-70 pounds. Who needs weight training? Last night she was trying to stand up from sitting on my leg in the floor without help at all. Then she did some gutsy "back hamsprings" that make me think she'll like gymnastics.
Then around 2PM today...she started having thicker secretions and de-SATing where we had to bump her to 5 and 6 liters for significant periods. I gave her an extra nebulizer. She spiked a temp of 101 for which I gave her Ibuprofen, and it came down after an hour. Now it's 11PM and she seems to be doing better and down to 4 liters O2. Hmm. Maybe 72 hours off of steroids caught up with her? Maybe she just really likes the Xopenex she had last week? Or maybe she's not as good on the Atrovent as we thought?
The fun keeps coming. Kiera's ventilator has been recalled and it may take 3 or more months to get a replacement. The affected ventilators are a certain series of serial numbers. Kiera is completely vent dependent, and all the Apria owned LTV's here are included in this recall. So, we have to wait potentially 3 or more months for them to get new or modified ones to exchange. Apparently, there is some kind of circuit board problem that causes the vent NOT to alarm when disconnected or inoperable? As if I wasn't getting enough sleep already. At least we sleep in her room, and she's usually restless if she's having respiratory distress or I hear the air pressure when the vent disconnects, in case the alarm were to NOT sound. I guess there's not much we can do but wait and be on alert. It's still the best option for a home vent out there. At least she's on a pulse oximeter, but last week while she was sick, it seemed to have enough of a delay in picking up her desats that everytime I went into the kitchen for even a minute and came back into the room her SAT monitor would be reading 90's, and she would clearly be a little acidotic and SAT-ing more like in the 70's, a bit purple around the mouth. When her secretions are bad, she can go downhill fast. They did just start sending us different probes that I hope are more accurate. Today is the first day I am trying the new ones. At least at night she's on an Apnea monitor, too, which likes to go off for all kinds of unnecessary reasons, so we do have that back up. Of course, by the time that goes off, it would be more serious than it would have to be.
All in all, I'm not TOO worried. It just adds to my constant level of worry already. :) Of course, since Apria is nationwide, and so many of their patients are affected, I think they are at the mercy of the Pulmonetics people. There are over 10,000 affected machines and only 1357 belong to Apria. I'll ask her pulmonologist what he thinks. I might also check with my contacts at the hospital to see if the 3 LTV's they have are included in the recall. I doubt they'd be able to lend me one, but Kiera does have friends in high places. I'm sure her stay there paid for 1 or 2. :)
Oh...and scratch that previous post about maybe having a FT day nurse after the 19th. I guess she tore her rotator cuff and won't be able to lift Kiera. The night nurse I thought I was inteviewing today was just a miscommunication. So I'm still waiting for a qualified FT person. In the meantime, Jer's converting the wine shop to an office for me to do bookkeeping and bring Kiera to play while I work. Isn't that sweet? :)
Therese
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