Bigger steps, Bigger Steps
Giant Steps! Giant Steps!
-Yo Gabba Gabba
Sorry for the delayed post - I know that y'all are on pins & needles (as we have been!) The wonderful news is that Jay is off ECMO!! That is a huge, giant step and we are so thankful that went as well as it did. Surgically, he did great - minimal bleeding (though he did need to receive some blood) and his blood pressure/rhythms/oxygen levels stayed right where they needed to be without mechanical support. We were able to come back and see him about 2 hours later, and I've never been so happy to see a dirty little boy. (Y'all, he's seriously grungy after the multiple betadine baths he's had.) We were almost able to celebrate this big milestone, but I think from now on we'll always take good news with a bit of "Okay, where's the hitch?" mixed in.
Things were looking beautiful for about an hour or two, but then he spiked a high fever. (See why we're always looking for a hitch?!) Fevers, unfortunately, are very hard on the heart. They can increase your heart rate. That speedy beat challenged his heart more than the docs were comfortable with. The stress on his heart caused his pressure to start dropping. Our absolute favorite doctor, Dr. BJ, was pretty concerned.
He started coming out of the anesthesia, which meant he was more awake ... but uncomfortable. They wanted to give him more morphine, but that unfortunately causes a drop in blood pressure - bad news when it's already lower than they wanted. I was trying not to freak out - at least visibly. Inside, I was shaking. But there were two things Derek and I could do: help to keep him calm (since more morphine was out of the question) and help to bring down the fever with cold washcloths. Both are mom skills, not nurse skills, and I was beyond grateful to be able to do SOMETHING.
So we sang. (Do the song lyrics give away the fact that we love music, in spite of our complete lack of musical talent?) And it really seemed to help keep him calm. Then we froze the poor kiddo with our continued icing down of every exposed body part. And his fever came down. I won't take all the credit for his improvement, but he is vastly improved now from where he was 2 hours ago. Upping the heart support meds helped some too, no doubt. But I am glad I was able to do something.
He is currently resting quietly, courtesy of some stronger happy/sleepy/be still juice. And, for the moment, his pressures are good and his heart rate is strong and his O2 levels are fantastic. He is by NO MEANS out of the woods. The next 24 hours are going to be huge, so please keep praying for us. He took a giant leap today, but there are still many many MANY more steps before we get our baby back in good shape.