Kyrie is holding her sats better this afternoon, and mostly her color is improved also. She has always struggled with shunting, though, where she can maintain her sats but not her peripheral color. She still has a fever, though, but hasn’t thrown up any more froth so far today. This is a relief.
Except the shunting, which is either nothing and will just always be her thing, or could be a problem if her organs are affected as well as peripherals.
But just because we pump air into her doesn’t mean it’s all getting where it needs to go or doing what we want it to do.
We have taken her to see the doctor, who is ready to do labs and chest X-rays as needed, but right now she is much better than she was last night.
Besides this, we had one of the best ever doctor conversations, maybe since Salt Lake last fall. I mean, our doctor endures us and is so patient and responsive, especially since this one can get so sick so fast, but we got new insights today that really made sense to us.
Kyrie was diagnosed with Pierre Robin Sequence because the repairs she needed structurally happen in that order, hence the “sequence”.
But she was also a drug baby, and the doctor talked about how drug babies are so unpredictable in so many different ways, and Kyrie is like this medically besides any PRS issues.
This fit some of what we have seen from the extra specialists: when she was in their area of crisis, they were really good at saving her life and did their job well, but they get confused when looking at her generally. There is a lot of variety within PRS, and Kyrie has the unpredictability of a drug baby besides, so they don’t always know what to do with the whole picture of what she presents. This is another reason that not only are the right specialists important, but equally necessary is the diligent pediatrician (and the whole team who does her referrals and the everyday work of keeping this baby alive and well).
She has her special issues, but she also is just a normal one year old who gets normal one year old germs and sicknesses. These may escalate more quickly because of PRS, or may present differently because she is a drug baby, but this is still everyday life in a baby becoming a toddler.
Other than special times, like intubation (though that is easier than it was) or when it is time for distraction again, or when she is four and needs the p-flap surgery done, we don’t need to get lost too many doctors that don’t know what to do with her version of PRS. Instead, we can just know she is a drug baby, presents differently, and focus on what we can do to help her breathe.
Even though this isn’t a magic wand, it made sense, and was comforting somehow, making space for the “crazy” part of her changing presentation without pinning it on us or ignoring her completely.
She has lost more weight, so that’s a problem, and we are going to keep trying to wean her off oxygen as she can, so she doesn’t match the charts as she should, but in her own world in her own way, she is doing great and making progress – even if that’s a normal illness without getting pneumonia.
Sometimes, I think she knows. She has learned, it seems, to somehow protect her airway above all else. When she gets a little sick or plays too hard or anything that uses extra calories she needs to be spending on breathing, she goes into shutdown mode. Not in a quitting or giving up way, but in a protective way, like a turtle in her shell. She has figured out how to do medically what her sister does emotionally.
In other news, she thought lunch was hilarious.