Over Presidents’ day weekend, Dorrie started to be a bit more swingy on her oxygen, and by Monday evening it was clear to us that she was coming down with something. After some back and forth with the hospital we managed to get Dr. Optimist paged so we could see what she thought we should do. (At the time, her heartrate was very high for no apparent reason, though she was still satting nicely and on not too much O2.)
She didn’t think there was immediate cause for alarm, so we stuck it out for the night, and sure enough, a few hours later Dorrie abruptly returned to normal. All the same, we went to the Ped’s office the next day. Lungs sounded clear, no sign of ear infection, no obvious reasons for concern. Ped deemed it probably ‘just a cold’. A phrase to strike terror into the hearts of preemie parents everywhere.
We wrangled Dorrie back home and spent the next few days trying to keep ourselves from needing to go into the hospital. Probably we did a bit too good of a job (and were too terrified by our last experience with the local er) because looking back, I can see that she might have done better had we managed to get to CHaD on Wed evening. But instead we stuck it out until Thu night when it was clear she was not doing too great — O2 was way up and worse, the extra O2 had really dried out her throat, making it even harder for her to breathe. At that point we spent quite a while uncertain of what to do. Would she start to get better if we could hold on through the night?
As she didn’t seem to be getting -worse- at this point, we decided to try and hold on and go to the Ped as soon as it opened in the morning. But Dorrie had other ideas and forced us to call an ambulance after almost making it through the night. Unfortunately, going in by ambulance means mom and dad have far less control over what happens and the local er freaked out again when she arrived. She was intubated by the time we got there (grr). A team came down from CHaD to rescue her (though not by helicopter this time — it was snowy), but this time, because it was possible she had RSV (though we figured highly unlikely, as she’d successfully battled the thing for 4 days) she had to go to PICU instead of the ICN.
And here we still sit, messing with the damn ventilator AGAIN, with a bunch of doctors who don’t really know her and -her- baseline — because her baseline is not the same as the baseline of your average 4 month old. Or even your average 4 month old preemie. Though we told them she probably didn’t have RSV, they chose to treat her initially as having it (until we were proved right when she tested negative) and so I sort of feel we lost last weekend where, after the acute phase of her issue had passed, she probably could have been extubated right away.
It’s been an exercise in frustration, really, trying to get them to stop pumping her full of sedatives at the least little twitch away from their accepted parameters. Parameters that are just not normal for Dorrie even in her best days. After I had a bit of a breakdown yesterday talking to the nurse who works with Dr. Optimist, she came down this morning to lay down some instructions for the people handling the case. (She used to attend at the PICU, but doesn’t anymore.) Hopefully that will see things improving.