Breathe in, hold for 10-25 seconds...breathe out. Take a breath or two, and hold again. Repeat.
Initially, we were only noticing it every once in a while. One of us would hear the tell-tale squeak of her holding in a breath and slowly letting it seep out and say, "KayTar, breathe." and she would. Now, though, nearly every time I take notice of how she is breathing, it is in this pattern. I don't know if I was only noticing it intermittently at first because it was the school year and we weren't together so much, or if it really has increased in frequency...but it is getting close to 100% of the time, whether she knows I'm around or not. I've asked her about why she breathes like that and she says,
"Breathing all the time makes me too tired, so I just take a break."Sounds reasonable enough, except that it is super weird! I've spot checked her O2 sats for a few days and initially they seemed normal, 97-99, with a few drops to 94 that I thought were misreads, but since then I've seen her sats drop multiple times. She's dropped to 92 and stayed, 93-94, even down to 87 and 88. She seemed totally normal during the desats, so I don't know if all of the low numbers are misreads or what. The oximeter is reading fine on the rest of us (I've checked it against us, especially when it has showed low sats for her) and is pretty consistent and the wave form seems steady during these times, too. She's in the 99-97 zone much of the time, but with spot checks, I don't know how much of the story I'm getting or how much attention to pay to the lower numbers. She does seem fine, honestly, but part of me wonders if periodic low O2 could be contributing to the headaches she started having a few months back.
Her respiratory rate is quite low at times, though, because she spends most of each minute holding her breath in. Once she is asleep, her breathing patterns normalize, so it seems to be consciously controlled. I guess it could be a behavioral thing, but I just can't figure out why she would be choosing to hold her breath all the time if there isn't an underlying reason. I've tried it and it is quite uncomfortable. She doesn't even seem to notice she is doing it, though, unless I mention it. Yesterday I caught her breathing regularly once and asked her about it and she told me she just wasn't that tired, so she didn't need to take a break.
Her heart rate has also shown a bit of a range, the low has been 55-60 at night and up to 145-149 in the morning at rest, but overall most checks are in the normal range of 70-80 when asleep and 110-120 during the day at rest. When active (jogging in place for abut 15 seconds), her heart rate was up to 157. She's always had slightly variable vitals when we've been inpatient on monitors, so it isn't a huge surprise, but with the odd breathing pattern it is worth checking a little. A little strange breathing is one thing, which is why we kind of ignored it initially, but weird breathing because she is too tired to breathe properly that is negatively affecting her O2 sats is a little more concerning. Though, I can't say with certainty that it IS affecting her oxygen levels. This is the hard part of having an undiagnosed kid, there is no way to know what to expect or when to be concerned. When something strange comes up like this, I'm not quite sure who to take it to or what the appropriate course of action is!