Has it only been two days since we last sent an update about Anastasia? Once again the events of this week have left me in a time warp and having to look at my phone or computer to determine what day it actually is. So much has happened…
The official word on why Anastasia was having breathing issues on Tuesday night is accumulation of secretions in her throat which were partially blocking her airway (which lowered her oxygen saturation, which raised our heart rates). The secretions are common in infants with HPE and we were given a syringe bulb when we left the hospital last Friday but that was insufficiently effective against her issues Tuesday, even if we had realized at the time exactly what the issue was. So Tuesday night the medical team used a proper suction device to clear her airway and added an order for a more effective suction device to our durable medical equipment (DME) prescription. In terms of breathing assistance, she was put on a CPAP in the wee hours of Wednesday morning but has since re-graduated to only a cannula; we’re working on getting her oxygen supply rate down to the point where she’s fine on room air or low enough that there’s no objection to returning her home.
I mentioned that the initial screening of Anastasia’s lungs on Tuesday night ruled out concerns about her having caught a cold. A further test to determine if she had a cold, flu, or common viral infection came up negative, another great sign. Had this update been sent 24 hours ago I would have mentioned that, in all likelihood, she would be making yet another Friday afternoon homecoming.
But yesterday afternoon her breathing stopped. And for mom, who was in the room with her, time seemed to stop. A score of nurses didn’t stop but swarmed the pod where Anastasia was turning blue and purple due to lack of oxygen. The same issue of secretions that caused us to return to the hospital and NICU on Tuesday night had returned, only more so. Anastasia’s airway and lungs were suctioned and breathing was restored. Unfortunately, she also aspirated some of the stuff that was blocking her airway so now “Is that going to cause a lung infection?” is a question the routine observations of her status are trying to answer. So far the answer is in the negative and we pray it stays that way.
So for now the expectation is that she won’t be going home today but we are hoping for tomorrow… and I’m hoping to find time for an update within the first 24 hours of her return home when that happens!
Again, our sincere thanks to everyone who has been praying for and helping us in other ways — like our neighbor who drove his riding mower over to my house and cut the lengthening grass (I haven’t had time to service my mowers for use this season yet). Without all of the help I think sleep would go from being the best 12 hours of my week to something to which I aspire to experience again before Labor Day… You are in our prayers and we implore God to bless you abundantly in return!
With gratitude and drowsiness,
Daddy and Mommy
I’m not so out of it that I’m going to forget a photo:
CPAP: Continuously Precious Anastasia Peeking (at you)
