We woke up this morning with a bit of a start: when we called in to check on our boy, we found out he'd had a very stable night. That wasn't the scary part. Then, we were told that there was the possibility that today was the day his ECMO circuit would be changed. Basically, a given circuit (tubing) of ECMO has a set lifespan that is dependent on the person receiving it, as well as the mechanical fortitude of its parts. When there is an increase in clotting that can't be managed with medication, the conversation begins about replacing the circuit. While this is a routine procedure, anything that directly affects your baby is automatically not routine. One of our lovely nurses, Tracey, shared this news with us and then directed us to the Great Ken, our lovable and quirky ECMO technician (we've had others, but he's our fave). After explaining the nature of the process, he proceeded to tell us that Rafa has done "remarkably well" tolerating his circuit for "this long."
This long? It's only been 10 days! But it's all relative. Apparently, some circuits need to be changed every three days, while a select few can last for a full three weeks, and everything in between. While we're hoping to get as much bang for our buck as possible out of the current circuit, since it means re-introducing fluid into his system after he's made such progress getting rid of it, we will follow the course along with Rafa and give him all of our love and strength.
We did have our family meeting today, at which the following folks were present: Daddy, Mommy, Grandma Sherrie, Dr. Chan, Nurse Tracey, Dr. Klineman (new face--an attending on level with Dr. Jennings and Dr. Weldon), Dr. Stotten, and one more nurse whose name I don't remember (sorry, Nurse!) No surprises, thank God, but lots of affirmation, albeit in medical-ese, for Rafa's progress and his continued growth.
Two highlights: his lung volume is up to 7 CCs as of this morning! AMAZING! And his doctors foresee him ready for a trial off of ECMO in as soon as 10 days.
We've done 10 days already, we can certainly do 10 more!
Hang ten, baby boy! We are so with you!