Thursday, August 12, 2010

Here's the Scoop

I'll start by saying that this post is just going to be a high level overview of what's been going on. I'm hoping to find some time this weekend to sit down and find pictures and links and thoroughly explain what is happening. But for now, just the basics.

Drew got a cold about 2mo ago. When his cough and froggy voice persisted, he was put on oral antibiotics as the thinking was that he managed to grow some bacteria that needed to be eradicated. Several days later and no better, we were admitted to the hospital for IV antibiotics. Still sounding the same after another week, it was concluded that something other than bacteria was causing this sound. That was good from a CF perspective, but raised some other concerns as to what the problem is.

On Tuesday, we were back at Childrens for a Bronchoscopy and Laryngoscopy (english: they stick tiny cameras down his throat and into his lungs to take some pictures). The were thinking they would discover that he simply had floppy airways (malacia) but found something very different. First, toward the top of his trachea or airway, they noticed that something seemed to be compressing it. Its supposed to be a big round opening and Drews is squished near flat in one area. Once you pass that spot it opens back to to normal size. However, the behavior of the trachea was un like anything they had ever seen. Normally when we breathe in our airways expand and when we breathe out our aIrways contract, in unison. Portions of Drews trachea open up when he breathes in but other portions compress.

They decided to admit us based on their findings and try to further investigatge to bigger issue of what is compressing his trachea. They did a CT scan and found that the aortic artery crosses his trachea a little low and is compressing. Its not an uncommon thing, but it does require surgery to fix. A chest surgeon will open him up, lift the artery off of his airway, and attach it with a stitch to his sternum. Whiles he's open, a pulmonologist and an ENT will be present to watch him breathe and see if they can determine the cause of or the solution for the second issue. (I know its hard to understand which is why I will do another post with pictures and all).

So what does this all mean for Drew? It means he's got shitty shitty luck. This in no way has anything to do with the CF but because of the CF its a big problem. These problems are prohibiting him from effectively clearing his airways, a critical element of staying healthy for CFers. The aortic valve problem isn't totally uncommon, and many times its not an issue that needs surgical intervention. However, hecause of the CF it needs to be fixed.

I requested that the doctors and surgeons and everyone from every specialty involved get together and talk about this so we are sure this is the best option. They are also going to help facilitate a second opinion. We should hear from them next week or so with the game plan, but its looking like somethig they would like to see happen in the next couple weeks.

It sucks, I'm sad and worried, but we need to do what's best.

More to come.


  1. Erin, we continue to pray for all of you. Hope you are doing well too!! Thank you for all the is overwhelming to read, can't believe you are living thru it all...Love to all the babies.

  2. Praying for you guys. Thanks for taking the time to let us know what is going on - not gonna lie, I have turned in to a stalker of your blog:)