A More Detailed Update On Declan's Procedure

Hey all!

I just wanted to take a minute to give a more detailed update on Declan's procedure and the overall diagnosis (or lack thereof) of what's causing his breathing issues.

Let me begin by saying that Declan is very healthy! We're asking for prayers because it's obviously a concern, but this is not affecting his overall health at the time (for which we're really grateful), and we don't want anyone to worry unnecessarily.

The procedure they did today is called a direct laryngoscopy. They actually did something else too, but I forgot what it's called. The whole thing was essentially to check for any obstruction of his airway-- something that might explain the stridor (which is the gasping sound he makes when he breathes sometimes).

It's always a little difficult for me to update on something I don't completely understand, but I'll try to explain what we were told the best I can.

Coming into today, we knew that there were basically two situations the doctor was checking for, the first of which is called a subglottic hemangioma, and the second of which is called laryngomalacia.  A hemangioma is the little red "birth mark" (they actually don't appear until a few weeks after birth) on Declan's neck.  A subglottic hemangioma is a hemangioma that grows not only outside the skin, but underneath the skin in the airway. This condition is pretty rare, so I wasn't really expecting this outcome, but because of the location of DJ's hemangioma they had to check. The second condition, laryngomalacia, literally means soft larynx. Usually the larynx is rigid, like a straw, but sometimes it can be softer than usual in children, causing stridor. This condition is fairly common and usually not a big deal-- kids almost always grow out of it.

I felt sure coming into today that they'd go in, scope the area out, and come out saying "yep-- it's definitely laryngomalacia; he'll grow out of it-- no big deal."

Fortunately and unfortunately, they didn't notice any major blockage of his airway. They said it narrows slightly, but nothing that could really account for his stridor. This is good, in a way, because we obviously don't want there to be an obstruction, but also annoying, in another way, because there's obviously something causing issues for him and we don't yet know what that is.

I'm a little confused because I thought for sure if they didn't note an obstruction (that would be from the hemangioma), they'd chalk it up to laryngomalacia and that would be that. So I was surprised when the doctor told me his symptoms don't sound consistent with laryngomalacia-- it seemed like they did last time-- but I really like him and trust his opinion, so I'll trust him on this. Not to mention he has a degree in medicine and I can basically just measure out correct doses of Tylenol.

The other thing he mentioned was the fact that, even when Declan was sedated and on a breathing tube, they couldn't get his oxygen up to 100%. He said it's nothing to be worried about-- his levels were around 97%-- but that usually they can get children up to 100%, especially while on oxygen. This also indicated that there might be a bigger issue.

He referred Declan to a pulmonologist (lung doctor) in Roanoke. We go for an appointment next Tuesday. Hopefully it's a fairly painless process.  I'm worried that we're putting him through all of this over nothing-- like I said, he's a very healthy baby (toddler-- oh gosh)-- but I know that breathing is nothing to mess around with, and I'm grateful for doctors who err on the side of caution. If there is a bigger issue, I'd rather know about it now than later.

Declan was an absolute trooper today. He didn't cry once when they were taking his blood, and considering how confused he must have been after the procedure, he handled it pretty well. It was so tough to see him go through all of this, especially knowing we're not really any closer to knowing what's wrong with him. Pray for me and Matt as we take him to his appointment next week-- that we'll trust the doctors taking care of Declan, but also that we'll have enough discernment to know what's necessary and what's not.