Day 12/13-A Reality Check

Lest we forget we're on a roller coaster, we got a reminder this afternoon leading all the way into the wee hours of the morning.

We were warned that it was very possible that Rafa, like most babies who have an ECMO circuit change, will have an inflammatory response as his body attempts to acclimate. This can mean fluctuations in vital signs as well as taking on new fluid. Well, we certainly did see some fluctuations!

Before I share more, let me put this in perspective, as much for myself as for you all: he is fine. In the ways that matter, he is, at his core, stable, and all of his health practitioners were ready for this eventuality. They were ready to tweak his oxygen flow, adjust his meds, even give him more Lasix to help him pee out additional fluids. And as a result, he's in a good place right now.

Late this afternoon, Rafa began to desat down to the low 90s from where he'd been in the high 90s/100. That's ECMO talk for lose oxygen in his blood flow. Once this was gotten under some control, his blood pressure began to rise. Both of these occurrences can be explained a number of ways, one of the most interesting is that his heart has begun to shunt. This means it is attempting to reclaim some of the blood flow being regulated by the machine. Therefore, Rafa is likely to be, once again, trying to call the shots. However, it's given his family more than a few heart attacks.

Mommy was convinced that she needed to spend the night at his bedside in order to make it all OK. Daddy and Grandma came to join her for a couple of hours before it was decided it was best for all concerned if we went home to attempt to get a good night's sleep. Tonight's nurse, Christine, and ECMO tech Mike, were both feeling good about his stats and as though he was very stable where he was, despite the fact that his blood pressure was still a bit on the high side. So here we are, awake at 1:30 in the AM, trying to wind down from the day.

What's the lesson? Even in the smallest of increments, the CDH roller coaster applies to all, even to our little warrior. The best we can do is ride it out, hanging on to the front of the boat, and be ever grateful for where things stand. We have been largely spared any major detours on this road ahead, and we thank our lucky stars every minute of every day for that.

Keep praying, troops!