Last night, not long after finally sending out the delayed update about Anastasia’s homecoming, we noticed that her breathing became labored and her coloration began to be a little less pink. We checked her oxygen saturation levels and discovered they had dropped well below what they should have been (low 60s versus upper 80s, lower 90s) but she recovered her levels once we gave her oxygen via a cannula. Per protocol, we contacted the palliative visiting nurse on the phone, described the situation, and she told us to go to the ER at Children’s Mercy. Not exactly what we were planning to do at 10:00 PM but then we weren’t really in charge of the timeline and our little riddler decided to throw us another puzzle.
I suppose the trip to the ER (and then on to the NICU again) was good in the sense that any concerns we had that Anastasia had caught the colds that were going around the house this weekend were put to rest. Observation of her lungs via stethoscope and x-ray revealed that her lungs are fine. For reasons not fully known at the moment, she was accumulating CO2 in her blood and having trouble expelling it (hence the labored breathing). Additionally, but unrelated to the events of last night, she’s been responding less reliably to her anti-seizure “rescue drug” which suggests she’s attaining a tolerance to it and a larger dose is going to be required to bring her out of clustered, break-through seizures. So having her in-house where the big brains in neurology can observe her — and possibly alter her dosing schedule — is a blessing too. Our little girl’s first month has been a reflection on life in miniature: you can make all the plans you want but things beyond your control tend to intervene and steer you in directions you couldn’t have anticipated. However, if we maintain peace of soul in the process we’ll discover opportunities for Grace we couldn’t have imagined. We still want her home and breathing without mechanical assistance, but may God’s Will be done.
So at the moment we’re somewhat back to where we were a week ago: Anastasia is in Children’s Mercy NICU. But unlike last week we’re somewhat confident that she will be able to return home in a few days at most…. at least that’s what her condition is leading us to believe at the moment.
Thank you for your continued prayers; please don’t neglect to pray for those who have been able to help us in various way, such as Mommy’s friend who immediately drove over to our house last night to babysit (be there in case the kids awoke). We cannot thank you all enough.
With patience and hope in the face of renewed uncertainty,
Daddy and Mommy
Despite the setback we cannot neglect the best part: a picture!
Like deja vu all over again: snuggling in the NICU
