We're pretty concerned about Gwendolyn. She has had several very, very scary choking episodes over the last few weeks while off bi-pap, is really struggling coming off bi-pap at all at this point, has had a few episodes of turning gray and dusky even while on bi-pap, has been lethargic, fussy, and just plain isn't herself right now. In general, all of her stats — heart rate, oxygen saturation, and temperature — have been normal save for this morning when her oxygen saturation crashed into the 70%'s on our last set of Cough Assist during her morning breathing treatment. But she rebounded relatively quickly with oral suctioning and another quick cough set. And, to top it off, I got a serious yellowish mucus plug while suctioning her orally after our walk this morning — I think she was working on bringing that up the whole morning which is probably what caused the issue during her morning treatment.
Every second of every day we operate on a ridiculously high level of anxiety, alertness, awareness, and readiness — even when Gwendolyn is perfectly healthy. We have to, as she can literally plug and stop breathing, as she has several times over the last few weeks and countless times over the last two years, at any second with zero warning, no signs, and no way to tell us (we literally have to be watching her 24/7). And when we see even the slightest signs of change in anything, and I mean absolutely anything, it sends us into a new stress galaxy altogether.
For me, besides the obvious, this is one of the most exhausting parts of parenting a child with SMA Type I. I kind of feel like I'm in a constant state of DEFCON 1: I know the inevitability and the statistics of the disease, I've had to watch Gwendolyn valiantly fight for her life on too many occasions already, I know that we are on borrowed time, I know pretty much all of the scenarios of how this will likely unfold, but…and this is a HUGE BUT…I don't know when. It could be right this second, it could be tonight, it could be tomorrow, it could be next month, it could be next year, it could be five years from now. Regardless, we have to live our lives on a second to second basis knowing that we are going to lose our daughter to SMA and it could be at any one of those preciously short seconds. And that's pure torture for me. Plain and simple.
We'll be continuing to watch her very, very, very closely and are going to try and take it easy this weekend. We're taking Gwendolyn to see her pediatrician, Dr. David Abbott, right now (yes, he's coming in to the office on a Saturday just to see Gwendolyn — an amazing doctor) so he can have a look at her and see if there is anything we should be overly concerned about. Ironically, we are headed to Stanford for a routine appointment with Gwendolyn's pulmonologist extraordinaire, Dr. Nanci Yuan, on Tuesday, so that appointment couldn't come at a better time.
Here's a picture of Gwendolyn this morning before we went on our long, Saturday walk. I absolutely love my walks with her. They are one of my most cherished times we have together.
