Our "normal"

It's kind of crazy how quickly one can adapt to a new standard of normal. As I was on hold tonight with the telehealth nurse at Gillette, my mind was going over not only what we were discussing tonight related to Mira, but also past calls of a similar nature.*

It's kind of crazy to be calmly telling the nurse that your daughter has been coughing pretty intensely over the last hour or so, and just recently is coughing up blood. It's possible the blood is because Daddy nicked something while suctioning, and equally possible that the blood is coming from deeper inside. "Her sat's are sitting between 88 and 91," I calmly report, "so we're guessing you probably want us to bring her in." A moment later, "No, we don't have oxygen at home." That's mostly because, as our favorite doctor over there has said about Mira, for her, if she needs oxygen, she needs to be somewhere where she can have medical care. And that's a good thing, I think, that their impression of her (and ours, too, at this point) is that usually she's okay without it.

This photo is from a week or two ago, and needs a little explanation. One of the big things she's gained over the time she's been with us is her ability to tolerate positions other than "one side" or "the other side." She can now spend time sitting in her chair at a variety of angles off vertical, can be put on her back (when propped) for short periods of time, and can also handle this prone position very well. Until a few weeks ago, we proned her with a combination of pillows, a head rest, and some tight supervision. Now, thanks to one of our therapists who had this cushion unused somewhere, she's able to be in a much more stable position when proned, with a face cushion designed specifically for comfort and breathability while laying face down. It's been marvelous for her, and she regularly gets her best oxygen saturation readings (usually 98-100) when she's on her prone cushion.

Tonight we weren't getting the same results, with 94 or 95 being the highest we were hitting, and plenty lower than that, as well as violent, almost retching, coughing and some more blood with her heart rate topping out in the 160s. That's high for her.

It's kind of crazy to decide that after being told to take your daughter to the Emergency department that you decide a bath is on the agenda first. It *was* her bath day, and after the slimy drool she had last night, she really needed it for the sake of her hair if nothing else. The day didn't end up resulting in a bath, so it had been pushed off until tomorrow morning...but we didn't want to take her out without her hair looking pretty. 😊 Sweet girl.

So, now she's bathed, her bag's packed, Daddy's evening pear is quartered and cored so he can eat on the way, and I got to walk out into our lusciously fragrant yard to the sound of crickets and the light of the moon to send them off before heading in to call it a night myself.

I'll try to update in the morning with results. I'm guessing at a minimum we're going to be doing another "observation" stay.

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* Can't remember if I've shared this story here or not, but it still makes me laugh, so here it is. One of my favorite (in retrospect) 911 calls involves a bad run of seizures for Reuben about two years ago. Again, how quickly we humans can adjust to a new "normal" is almost frightening. It was nearly midnight, and after a particularly strong tonic/clonic seizure, Matt and I noticed a decent amount of blood coming out of Reuben's mouth. Now, first of all, heads bleed a lot, and blood mixed with saliva can look like a whole lot more blood than it really is, but at midnight when the light's not great, it's hard to tell what's okay and what's too much. We know that at times Reuben has ruptured some small blood vessels (like in his cheeks) during seizures, and weren't sure if what we were seeing was some sort of internal ruptures, a severed tongue...or just a prematurely removed first loose tooth. So, upon not finding a tooth immediately, I calmly placed the call, explaining that he'd been having some big seizures, and now was bleeding from his mouth and we weren't sure if it was just a tooth or something more. We live very close to where the ambulances wait for calls, so they were here very quickly. We carried Reuben and the towels we'd been using down to the kitchen to make the paramedics not have to tramp past as many sleeping children. As they walked in the door, we finally found...the tooth. It fell out of the towel and rolled onto the floor.

So, yes, these very experienced parents of (at the time) seven children really did call an ambulance when their son's first tooth fell out. Granted, it was a calm, reasoned call, with no panic, but still. What parent calls for an ambulance for a missing loose tooth?? Yep. That's us.