Today we got two pieces of hard news to explain the gallop and hoarseness.
The Gallop- As it turns out, Paul has right ventricular free wall dyskinesia, mild to moderately depressed wall motion, and mild right ventricle dilation
The Hoarseness- It has been confirmed by the Ear Nose and Throat(ENT) team that Paul has left vocal chord paralysis.
This is not great news. There are a ton of questions we have and have had all day. Here is the bottom line, the best way I can describe it;
1) Paul’s right ventricle is mildly-moderately dysfunctional and that’s a problem since it’s the only one he has. The team is concerned about it but not in a major way. This happens sometimes in the post-Glenn population. It happens because of fluid overload, a virus, or as a result of being on heart and lung bypass. Mostly it gets better with time and sometimes it gets worse. If it gets worse, we look at other options. We are not even close to that yet.
2) Vocal chord paralysis is immobility of a vocal fold because of damage or dysfunction of its principal nerve. It’s likely this happened during intubation as Paul did not have aortic reconstruction and that is what normally causes this during surgery. His voice will never go back to normal but should, with time, regain fairly normal functioning. This mostly impacts feeding as he now can not eat through his mouth until we do a milk scan and swallow study to determine whether or not he is aspirating. We hope he isn’t. If he is, we look at other options. We are closer to that than the above….
So, we wait. We wait and hope it gets better, not worse and most of the time it does get better. Keep praying, please. We want him to LIVE and LOVE and PLAY and be a kid whenever possible. He is a huge gift to us and we hope his fight has inspired you somehow. We appreciate your support more than you will ever know.