This was a good week for Samuel. We’ve seen him make a lot of progress this week and he had two tests that helped tell a story of what’s NOT going on.
First, Sammy’s breathing better and looking better. He’s had a lot of awake time, where he’s interacting with his musical toys, listening to various people read him books, playing with one of the nurses and just snuggling with me and Kristen. He also got to meet Stevie this week, and she held him for an hour or so.
His oxygen needs last week were 3 liters-per-minute of flow, with between 30 and 35% oxygen. This week he’s still on 3 liters-per-minute, but his oxygen needs are down in the 23% – 26% range. So that’s really encouraging. He still has desats – including some big ones. But we’re a bit more confident those are simply tied to his need for lung development. That just takes time.
Paralyzed Vocal Cords
On Monday, he had a visit from an Ear, Nose and Throat doctor, who inspected Sammy’s throat to see what was going on, since his voice has been raspy and soft since his PDA surgery.
One of the risks of the PDA surgery is the opportunity for the surgeon to touch, stretch or cut a nerve that controls the vocal cords. We were told of this, but it was downplayed a bit more than it should have been. It turns out it’s pretty common – and it’s not like we had much choice. It also turns out that it looks like Sammy’s vocal cord nerve was at least touched.
The ENT doctor validated that Samuel’s left vocal cord is paralyzed. It’s odd for me to say it, but that may not be as bad as it sounds. My fear was that the vocal cord was allowing saliva or other liquids to escape down his windpipe into his lungs. You and I experience this when we get water down the wrong pipe and we choke on it. Can you imagine if this was just how your life went? That was my fear.
Dr. Sandhu quickly ordered a test called a Swallow Test. We did that earlier today. Kristen and I got to be in the room for it, though we were behind a leaded-glass wall. The swallow test has a speech therapist feed Samuel a bottle that has formula mixed with Barium. This is an element that X-rays can’t penetrate. As he takes his feeding, a series of X-ray images are taken in rapid succession, effectively looking like a video. It shows the barium in his mouth, how his epiglottis is working, and what the impact is on his vocal cords. It also showed where the liquid was going further into his body.
The test only took about 10 minutes, and Samuel passed with flying colors. The good news is that his vocal cord may be paralyzed in a spot where it’s not allowing liquids to go down his windpipe. The suck, swallow, breathe reflex worked exactly as expected. We watched his epiglottis close and direct everything down his throat into his stomach. No issues! The speech therapist was thrilled, Dr. Sandhu was thrilled, the radiologist said the test couldn’t have gone any better, and Kristen and I were very happy to see this result. This means that Samuel can start taking a bottle carefully now.
Dr. Mikas stopped me in the hallway after the test and we talked for a few minutes. He said the doctors were thinking that Sammy’s vocal cord nerve was simply stretched, and it should heal in time. It may not mean complete recovery from paralysis, but certainly enough that he can breathe and eat normally, and his voice is likely to return so he can have a strong cry. We need them to have a big voice to put up with Jacob, who has a big voice of his own.
There’s some hope he’ll get better sooner, and home to us. He still has a ways to go, but we’re feeling a bit more confident now that he may get to live his life outside of a hospital soon enough.
I shouldn’t end this without talking about Jacob. He’s had a good week. He continues to be a really good baby, overall. He’s eating very well – we may need to go to bigger bottles in a few weeks since he reliably takes more than 100 mL now (3-4 ounces). He loves spending time with Stevie, who is doing a great job taking care of him, feeding him, changing diapers, playing with Jacob and reading books. She’s making our lives easier, for sure, but not to the point where we’re not doing our jobs as parents.
We notice that Jacob is starting to outgrow many of the things that just a month ago he barely fit into. His Pack ‘N Play is most noticeable, and his Rock ‘N Play is getting tight too. He’s busting out of his clothes, and we’re done buying newborn diapers. When we run out we’re going to #1’s – though we may have to go there before we run out!