I finally talked to the pulmonologist's nurse on Thursday. She said that Dr. J wants KayTar on oxygen when her sats hit 95% or below. I asked her the same question in about four different ways, hoping to get a different answer, but NOPE! 95% is when she needs to go on oxygen, no matter how I phrased it. The truth is that I was pretty deflated by this news. We've been checking her sats both at home and at school this week and she is RARELY over 95%...in fact, even with my low-ball order of at/below 92%, she still has been on oxygen twice at school this week! When I heard the official orders, I felt kind of like this...sideways and all. LOL!
I understand the orders, I do. If KayTar's body is already struggling to make ends meet and running sub-optimally, then allowing her to sat low and experience chronic, even slight hypoxemia, is not ideal...especially when we have the ability to fix it for her. I get it. I just feel a little fussy about it! Initially I was worried about how KayTar would feel about it because when she first started overnight oxygen, she said, "I'm glad I don't have to wear this at school, people would think I'm weird!" but when I talked to her about the fact that her needing to wear oxygen in class might be more than hypothetical, she said, "That'd be okay...and I could build my muscles from carrying the bag!" I've obviously got a lot to learn from that kid, because I was not feeling so swell about it!
We didn't want to rock the boat at school too much, but the (best) nurse (in the universe) offered to check her sats a little more frequently on Friday, in case the two little snapshots (before lunch/during PE) of her oxygen levels were not entirely telling...but still, at 2/3 checks she was below the cut-off and she ended up on oxygen in the afternoon. I don't know what it means or what the best way to proceed is, honestly. Maybe her sats are running low due to the infection she had LAST week or maybe they are always like this. Maybe we should just keep her on oxygen all day at school when she is in the classroom and PE (and let her go off of it for lunch/specials), since she is low so often and it isn't feasible to monitor her frequently. Maybe she just needs a boost a couple of times a day. Maybe, maybe, maybe! At this point, I don't know what our plan for Monday will be (oh, and to complicate this further, the regulators on the small tank seem to be malfunctioning!)...but I've at least accepted that we do need a plan! So far today, her sats have been good at every check...so I am still holding out a little hope that this is a temporary set-back due to the respiratory infection she is just getting over and maybe she will just need additional supports when recovering...but if that isn't the case, we'll deal with it.
The tough part is that when we "lose" something with her (or add supports/machinery/whatever, depending on how you look at it) it is usually permanent...so unfortunately, I have FEELINGS about such things which distract me from the important things in life, like the fact that she is here with us and she is HAPPY and she is "healthy" and we have the ability to support her in these ways here at home or at school and we have precious people in our lives who help us put her needs first and care for her when she is out in the world...so many blessings!! So instead, I'm choosing to feel like THIS (okay, maybe not quite THAT happy, but you get the idea)!
I am sorry you're having to take this step. I know you wanted to avoid it. She is such a great kid! Love her attitude.
Yeah, that does sound like it would be a tough one to grapple with. But hopefully your hunch (or hope) about the respiratory infection is right, and the under 95% times will turn out to be low. I'll keep fingers crossed.
I love how you illustrated your emotions with mulitmedia. How fun to see little tiny KayTar in action! She's grown so much.
I am ever in awe of your grace, Kyla. You and your family are amazing.
KayTar has the best attitude in the world. I do hope the daytime O2 keeps her body from working too hard, and allows her to conserve energy. Every time we add a new piece of equipment, I am secretly crushed by it. It's just another piece of physical evidence that Something Isn't Right. On the other hand, I am ecstatic when I see the positive changes in Nolan and how it all helps him - so the good outweighs the bad. Plus, these kids are AWESOME.
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