"Tomorrow's a Day Away"

I  have hesitated to write this post. I don't believe in jinxing, so it's not that. I just know that when you have a child with a single ventricle, anything can happen. We experienced that "anything" not too long ago.

The attending physician is talking about Ayden's discharge... tomorrow.

Everyone seems resolved about Ayden's feeding issues. He still has a feeding tube, and he is still receiving bolus feeds during the day and continuous feeds overnight. Since he is on continuous feeds overnight, he would wear an apnea monitor at home to inform us if something regarding his heart and/or lungs isn't going quite right.

Ayden has been uncoordinated with the bottle feeding. He wants to be able to bottle feed; he gets so excited when given the opportunity to try. He sucks, swallows, sucks, swallows, sucks, swallows... Are you seeing the missing part? He doesn't breathe, which then causes him to cough, and then he gets upset. We are working closely with speech pathology, and everyone concerned is rooting for Ayden to get it.

The element that appears to be keeping us at the hospital is whether or not Ayden needs a pacing study to see if the heart ablation did the trick. Dr. Fish requested an EKG this morning, and we await his decision. If he decides that Ayden does not need the pacing study, Katrina or Kelly (Bichell's nurses) will come to remove Ayden's pacing wires from his stomach. Then he requires a mini ECHO and four hours of vital sign monitoring. If Ayden does need the pacing study, then he will have to wait on an available bed in the PCCU and an available time with Dr. Fish.

And so we wait.

In the meantime, Jude is returning to 6C. He was discharged Monday, June 28th. At today's clinic visit, his chest x-ray showed wetness. When Jude arrives (he might be Ayden's neighbor!), he will receive IV Lasix (all of the cardiac babies take PO Lasix to remove the labor of their bodies having to pee on their own). Hopefully, Jude's visit will just be overnight.

And so they will wait too.