Tuesday, February 26, 2013

Going Down the Wrong Pipe!

The week would not be complete if we didn't have some type of appointment, right? Yesterday we headed to Cook Children's for Camden's swallow study. I have been worried about him aspirating milk into his lungs ever since he was learning how to eat in the NICU. He was (and still is) a very uncoordinated eater. There are a lot of gulps, gags, squeaks, gurgling and any other noise you can think of that goes on. This doesn't happen every time he eats, but enough to make me think that something is just not right. Now, I will be the first to admit that I get a little crazy and obsessive with research. So, when we determined that Camden had a floppy airway while in the hospital...I started googling. Bad, bad, bad idea! Well then I really went to crazy town! I had Camden diagnosed with everything possible...not good. However, when I did read that aspiration is common with floppy airways, I though maybe I wasn't so crazy anymore. Then I asked if we could do a swallow study (maybe 4 or 5 times) before he left the hospital. I was reassured those 4 or 5 times by different people that he was NOT aspirating and that it wasn't necessary. Okay, I'm a little paranoid, I get it. Home we go and I continue to worry. Week after week I sit there feeding him----which is not an easy task---still wondering. Finally I just call Dr Dyson and just ask for them to order one. Maybe it's because I work there, or maybe it's because they trust I know what I'm talking about, either way it was ordered pronto! At least we can put all of this behind us and I can stop going to crazy town. Well, I may be borderline insane...but he IS aspirating! I mean we didn't even get past one swallow. If you don't know what happens in a swallow study, let me explain it. They strap your baby to a little chair sitting upright in an x-ray room. You then stand in front of your baby so you can feed them while the radiologist and SLP (speech language pathologist) watch on the screen how the barium goes down. They use barium because it's a type of contrast medium that will show up on x-rays. It must not be to bad, because Camden gulped it down! Fluoroscopy images are taken as they drink the barium. We tried thin consistency first, which would be the same as formula. I give Camden the bottle, he takes one drink, and then I hear the radiologist say STOP! Um, okay...what did I do wrong? I didn't do anything wrong, it just went down the wrong pipe. Fail on the thins. You then go through different consistencies to see which ones they can drink without aspirating. We found out that Camden can do semi nectar thick liquids. So now we have to thicken all of his bottles. Needless to say, I am angry frustrated. Frustrated at myself for not advocating for my son and pushing for the swallow study while he was in the NICU. Frustrated because this is one more obstacle that he has to hurdle. In the big scheme of things this is not a big deal...I know that. Camden has other buddies that are enduring far worse. However, it still stinks! I thank God for not letting Camden get pneumonia from weeks of food going down the wrong pipe. We go back in 2 months for a repeat swallow study and hopefully he will have gotten strong enough that he can go back to regular liquids. If not...we will continue to do what we need to do. We will keep plugging along.

Taking a snooze before the big test

Sorry for the quality, my phone doesn't have a flash.

Strapped in and ready to go!
It's great that they have video games to entertain Carter!


  1. U my dear are a very steong and wonderful woman and mother. Ur boys r so lucky to have u. And thank u for the education. I have not had to deak with DS but I have always researched it. I am proud to say I went to school with u, saw u pledge ur vows of love, and now follow ur joys and sorrows thru motherhood. Thank u and know my prayers are always with u!!

    1. Ah Janie, thank you! That means a lot. It's amazing how even though we went through all that schooling, how I really didn't know about Down syndrome. I work with kids with Ds all the time, but never truly understood. Life has changed for sure, but I would like to think for the better. I hope you and your family are doing well!

  2. You're a good mama. You *did* advocate for him. If you hadn't called, you would have never known until much, much later.

    On a less serious note, he looks like a little angel asleep in his car seat picture. :)