Mighty Max Update

This is an update/video from our daughter on the progress on Mighty Max:

Max had another good day. I finally got to be back crib-side in the ICU after four days of a head cold. I was wrong the other day in thinking they had weaned him completely from the precedex (his sedative). They had started to wean and he started having withdrawal symptoms, which is common. So they went back up on it today and he was so much more comfortable. They figured that they didn’t give him enough time to adjust to the clonadine (used to help wean from sedatives), so they’re just going to let him wean more slowly. They want to move his central line from his IJ (in his neck) to a picc sometime tomorrow. His femoral line is out and today they re-sutured his the pacer lines without local anesthetic. He did so well.

The new mystery (kind of) is that now that his tube is out, he can cry….but he’s still not making any sound. This can happen. We had ENT come in and do a scope (not fun

) and it looks as though he has partial paralysis of one vocal cord. So it’s not completely paralyzed but “paretic”. Speech therapy will come in soon to do a swallow test to determine if it would cause aspiration during feeds and if so, they can treat it with an injection of something much like Botox. If not, then it IS something that will resolve itself over a few months. This was likely caused by the same stretching of nerves that affected his diaphragm after having his sternum split open for the Norwood surgery. Those two nerves are right next to each other. So the only sounds he makes are the tiniest, itty bittiest whimpers and it’s so sweet and sad and adorable, poor guy.

But overall today was good. We’re managing the withdrawals from sedatives, he’s been weaned from the INO machine (nitrous), his pressures, sats, and HR are good for the most part, and he’s more and more alert every day.

You’ll see in this video that he looks a little cross-eyed, but they assure me that it’s most likely from the weeks of sedation. He’s LOVING his pacifier and even roots for it. It’s beyond precious.