The Swallow Study

Our precious cutie

Today Benton had his long awaited swallow study.  For those of you who don't know what a swallow study is let me explain - a swallow study is where a speech therapist mixes a bunch of different foods with barium and has the patient swallow each different texture in front of an X-ray machine while a radiologist looks for signs of aspiration (i.e. inhaling the food into your airway).  Ever since we were in the hospital for Benton's pneumothorax the doctors have wanted a swallow study to see if he is truly aspirating his food.  If he is aspirating he will require a gtube no matter what because it won't be safe for him to continue eating by mouth.  In addition, if he aspirates it could explain why he hasn't come down on his oxygen requirement in the months since he came home from the NICU.

As we arrived at the radiology department we were filled with anticipation.  The long awaited day had arrived.  By the end of the session we would know for sure if Benton would need surgery and have a reason for why feeding him has been such a challenge.  We met with the speech therapist and she explained that she would mix a variety of foods with barium for Benton to try.  There would be his normal milk, a thickened formula, formula with rice cereal at two stages of thickness, and thin and thick purees.  We sat Benton in a seat in front of the xray machine, put on radiation gowns and got down to business.

Gowned up and ready to go!

First up was the milk mixed with barium.  It took quite a bit of effort to even get Benton interested in drinking this awkward tasting formula but he finally took some after cajoling.  As he swallowed we all watched the X-ray machine's live image to see if he aspirated.  He did.  Benton micro-aspirated the milk and didn't protect his airway.  The speech therapist explained that he didn't cough the fluid up so this was a danger to his lungs.  She further explained that since Benton had likely been micro-aspirating for months he no longer coughed as a response because he had gotten used to it.  His reactions to feeding by bottle were likely his way of telling us he wasn't comfortable drinking by mouth because he knew he couldn't protect his lungs!  My poor little guy!  He was trying to tell us for months that feeding was too hard but we didn't listen.

Our big 15 pound chunker outgrowing his napper

Next up was rice cereal at two different thicknesses.  We gave Benton the rice cereal in his bottle and apparently Benton is not good at taking foods via bottle because he micro-aspirated the rice cereal as well.  Finally it was time to try purees.  We put some thin sweet potatoes on a spoon and gave it to Benton....it was the moment of truth.  Would Benton be able to successfully swallow any food by mouth or would we have to wait months before trying again to feed him orally?  Well luckily Benton aced the purees!!!!  We tried purees on spoons followed by pacifiers, on his knobby Q and on a pacifier solo.  In all three instances he beautifully swallowed the purees!  This was great news - it meant that we would be able to work with him on eating solids in the months ahead before we could go in for another swallow study.  According to the speech therapist this is a really good thing because some kids aspirate all types of food and then they have to wait months before being retested and in the meantime can't practice swallowing.

After the swallow study was complete it was time for the Upper GI study.  This test would examine how Benton's stomach drains, if he refluxes and check for any abnormalities.  To complete the Upper GI study they had Benton lie down on a table and then they inserted food into his stomach via his NG tube as the radiologist reviewed where the barium-laced milk went.  The results of the Upper GI were normal - no abnormalities, slow motility or serious issues.  They did see some reflux but it wasn't conclusive as to whether it was being aspirated.

Now hearing all these results you might think okay Benton needs a Gtube but not a nissen since they couldn't see him aspirate his reflux and you might be right.  But the speech therapist cautioned us that just because we didn't see him aspirate his reflux that time it doesn't mean he doesn't other times.  In addition, the fact that he didn't protect his airway by coughing when he did micro-aspirate his milk means it is likely he wouldn't protect his airway if he does indeed reflux.  By the end of the study Joe and I felt like we had our answer.  Benton needed both a gtube and a nissen if we seriously wanted to protect his lungs so they could develop to their full potential.

A special moment with Dad

 I came out of the test feeling both relieved and nervous.  In some ways the results of this test were unsurprising, it had been clear to me for a long time that Benton was having issues eating and now we could pinpoint a reason.  It also made me better understand why we hadn't been able to wean his oxygen despite months out of the NICU, but at the same time the results showed that Benton would truly need surgery.  There was no way around it...he aspirates everything he drinks so he has to have surgery.  Despite mentally preparing myself for this reality it is always nerve-wracking to know your son is facing surgery in the coming weeks.  I hope that the next few weeks bring me peace with our decisions and that Benton remains strong and healthy going into surgery.

The past few weeks have been quite the roller coaster from constant doctors appointments to hospitalizations, but the silver lining is always how incredibly smiley and happy our little boy is on a daily basis.  He truly amazes us every single day with his joy for life and his ability to overcome obstacles.  We know that he is here by the grace of god and as a result of all of your healing prayers.  Please continue to pray for our little guy.  We need prayers for his lungs to get stronger and not be affected by aspiration, for his pulmonary hypertension to decrease and that his future surgeries be successful and without complications.  We cannot thank you enough for all of your prayers, thoughts and healing energy you have sent to our little fighter.  We are forever in your debt.

Someone found his thumb!