Let's Make Some Noise

Because Carter is (fingers crossed) about to...

This has nothing to do with this post other than I love his profile and big noggin

Tuesday was the much anticipated scope where we would check out the status of Carter's airway. Turns out his airway looks great. His Vocal chords not so good at all. Initially Doctors and everyone thought that the bigger problem causing Carter to not be able to breathe on his own was the swelling/narrowing of his airway due to prolonged time on the ventilator. The lesser or so we thought problem was his paralyzed vocal chord which was a side effect of his heart surgery. The hope was that once the swelling went down in his airway there would be enough room for his vocal chords to function as they should and it would be easier for the right one to make up what the left was lacking. When Doctor Rohne (my absolute fav of all his docs) went down the swelling was almost completely gone, but his left vocal chord was doing absolutely nothing. In order for someone to breathe both chords need to be able to open and close and meet in the middle positon. Carters right can make it to midline, but his left stays open. Lots of times in paralyzed vocal patients one is usually weaker and the other is able to become more flexible and make up for it. Carters right was definitely not strong enough to pick up the lack. Does this even make sense? Basically Carter would not be able to breathe on his own without the trach.

What does it all mean?

Well it means a couple different things. Mostly more time and possibly surgery. We will continue to scope him every 3 months to check the progress and pray that there is some. If come March (when we were hoping to have it removed) there isn't any or enough progress we will discuss surgery. The surgery would be placing a stint on Carter's vocal chord to bring it mid line and stay put. The Doc said that he does not like to do the surgery on patients as small as Carter because it takes up some of their airway and babies airways are already so small. When I asked at what age he would operate he said we would discuss it when and if it is the route we will take. He is a nice guy and very sensitive to things like this. Which means he was not talking about anytime soon. Toddler possibly? So pretty much we are praying for a miracle yet again. It is very hard for Carter's vocal chords to get stronger with what he is doing now. Since he can't make any noise with his trach he doesn't really have any motivation to try and make noise and back to the feeding swallowing is great exercise for them. We really need Carter to be able to take a bottle and swallow.

So what are we going to do?

We are going to continue to make feeding our top priority. We are also going to get him what is called a "Passy Muir Speaking Valve" Tuesdays appointment wasn't all bad news (even though you would have thought so had you talked to me that day) The Passy Muir is something that was completely thrown out the door for Carter's case because of his narrow airway. It wasn't something we gave much attention to because we thought that we would be waiting on the airway not the vocal chord. What is it you ask. Here is a little YouTube clip about it.

Basically he will breathe in through his trach and out through his mouth and nose therefore being able to make sound!!!! I can't tell you how happy I am about this. One of the hardest parts of the trach for me has been not being able to hear him make any sound. The Doc says it takes most kids about two months to be able to figure it out to the point that they can wear it all day. We have our fingers crossed that it is something Carter will be able to do. There are a lot of benefits to the valve increased appetite due to being able to taste and smell better, less secretions, more use of vocals, and many more. Theses are definitely things we could use some help in. We should hopefully be getting it from our med company in the next week.

Can you just imagine a little squeal coming with that smile or a laugh. O I couldn't even imagine anything that would make he happier than to hear him laugh. I get giddy thinking about it.