Sunday, August 1: Update

We were shaken today from whatever semblance of normalcy we had obtained since coming home. Claire completed a feeding around 12:30 PM today and we were calling emergency services at 1:00 PM. Before telling the story, know that Claire is all right now. She is sleeping well. I won’t sleep as well tonight.

Claire has been having trouble keeping her meals down from time to time. We’ve had to monitor how much she eats in one feeding because we’ve found that the recommended dose has prompted some reflux. The trouble has accompanied the evening feeding for the most part. Today’s episode happened after her midday feeding. When Claire begins to have reflux, we coax her to breath and calm down and she normally responds. The coaxing didn’t work today. Claire lost all of her lunch today. The trouble began when she didn’t discharge all of the liquid meal. Some of the liquid was not evacuated completely and caused Claire to gag and choke. By the time I was starting the Heimlich she was turning a pale blue. Tiffany called emergency services immediately while Esther and I worked on clearing her airway. She soon had air back in her lungs and was breathing well. All this took place in less than a minute.

The EMTs checked Claire and found her vitals to be strong and her lungs clear. Once she was breathing again, our biggest concern was whether or not she had aspirated anything. Even though her lungs were clear, we toiled over whether we should take her to the ER or not. We also didn’t want to subject Claire to any further unnecessary poking and prodding in an acute setting. We called Claire’s primary care physician and she helped put our mind at ease by equipping us with the things we need to watch for to make sure Claire hadn’t aspirated. We’re 10 hours post-incident now and Claire isn’t exhibiting any of the signs, and we make sure to check every 10 minutes.

The episode seems innocuous enough, but it was most potent because of the images it recalled for me. The action I had to perform today was similar to the actions I performed on May 30. The parallels brought the emotional burden of that day back to my shoulders. It also reminded us of just how fragile Claire is right now. We’d begun to settle in to the idea that Claire’s big hurdle right now is her rehabilitation and recovery. We’d been lulled into a false sense of security that those would be our only hurdles. We thought we were past the challenges like today’s episode. That sense of calm was shattered today. It has drained us.

We takeaway some more knowledge about how to handle these situations as Claire’s first responders. We are also refining Claire’s feedings schedule to be more kind to her stomach and help avoid these situations in the future. But these learnings come in the wake of another shocking event. What feelings we had of our new normal have been scattered. Tomorrow we start a new “new normal”. We’re uncertain whether that will be sufficient to establish a routine, or if there is another freight train waiting around the corner.

We hope that train doesn’t come tonight, but we’ll be checking on her every few minutes to make sure we can head it off. It’s about time to check on her again, so I’m going to wrap this up. Thank you for your prayers and support. We need them for days like this particularly.