Swallow Study

I got a phone call from Sutter Memorial Hospital on June 11. They wanted to schedule Caden for a barium swallow study. We have been on the waiting list to have this done for 6 months! Then when they called, they were ready to schedule it for Thursday, June 17. I was shocked they were scheduling it for less than a week from the time they called me.

I really wasn't sure if it was going to be worth it or not but scheduled it anyway. Caden is not exactly eating anything by mouth. When I work with him, I can't get him to accept any tastes in his mouth even. However when our feeding therapist is here once/week, she is usually able to get him to tolerate several tastes. I say “tolerate” because he isn't exactly excited about it. He doesn't open his mouth. For him to tolerate it means that he's not shaking his head side to side rapidly and he's not blocking the spoon with his hands or shoving it away.

I called our feeding therapist and talked to her about it. She ended up calling the speech and language pathologist (SLP) who does the swallow studies to get her thoughts. The conclusion was that we give it a try and see what happens. My only fear was that we would traumatize him more by doing it and wasn't really sure it would even end up showing us anything useful.

For those who don't know, a barium swallow study is done in radiology. The barium is a dye they can see with x-ray as they watch what happens to liquids as they are swallowed. Is it going down the esophagus like it's supposed to? Or is it being aspirated into the lungs? Things like that.

Thursday morning did NOT start off well. We had to wait longer than I would have liked... then when the SLP did take us back into the room, there was no place for Caden to sit and he didn't want to be held. He was really agitated and fussy. And I had to answer multiple questions, sign some paperwork, etc. The SLP didn't seem to be in any sort of hurry and I was trying to let her know the longer we waited the less chance there was of accomplishing anything useful.

Finally we were able to start. When I first placed him in the seat and put the lead apron over him, he just started screaming. I can't blame him, he was in a strange place with strange people and doing strange things. Usually those things do not bode well for him and he knows it. :( So I held him for a little while longer while the SLP mixed up the baby applesauce with the barium and while we waited for the radiologist. As soon as the radiologist arrived, I placed him back in the seat and he started crying again. But there must have been something calming about the radiologist, who was a small Asian guy, because Caden settled down and watched all of us warily.

As soon as the equipment was in place, they started recording the scan. I was STUNNED when Caden actually allowed me to put a small taste of food in his mouth. Again, I must clarify. This means he just sat there. He didn't open his mouth willingly, but he didn't turn his head away or try to push me away with his hands. So I was able to push in quite a few tastes of the applesauce/barium mixture and then we switched to just barium which is more of a thin liquid.

The study showed the following: Caden is not currently aspirating. None of the swallows he took were aspirated. GREAT news! On the second bite, the liquid penetrated the voice box. I guess it's pretty common for the first two or three bites to go where they are not supposed to. After all, the kids are usually upset or crying or something. So the SLP wasn't really concerned about that. Keep in mind though that Caden does have a cleft in his right vocal cord which is damage from the ventilator tube. This means he has a hole when his vocal cords come together which isn't great.

But they did note he had a delayed swallow. This means he is holding food/liquids in the back of his throat before swallowing. This puts him at risk of micro aspiration because as he holds it there, it can leak through the cleft in the cord and go down the trachea into the lungs. This is kind of a bummer. But my perspective is that he has a weak swallow because he hasn't had the chance to practice it much. I think as he takes more food and is swallowing more, the swallow will get stronger and faster and therefore it will become less of an issue.

I told the SLP that we are supposed to be starting intensive feeding therapy this fall with Dr. Patel/Clinic 4 Kidz. She asked me what my goal was with that program. I honestly couldn't believe she asked me the question, but I responded by saying our goal is to get Caden completely off the feeding tube. Obviously! Why else would I be doing it??? Anyway, she wanted to make sure that I shared a copy of her report with Dr. Patel and also with our pulmonologist to make sure everyone was on the same page and had accurate information.

I am trying to keep in mind that this SLP doesn't really know Caden. She doesn't know his history, she doesn't know his personality, etc. So even though she was acting very cautious about advancing with oral feeds, I am not quite as hesitant. I talked to our regular feeding therapist after the study and she was in complete agreement with me. She said there didn't appear to be anything neurologically that would be preventing Caden from having a stronger swallow. She thinks it will just take practice and repetition. She didn't see any reason for us to not continue moving forward.

I also talked to our former nurse case manager through our insurance and she said that just because he has a delayed swallow doesn't mean he can't eat by mouth. She said it just means that you have to give him more time between bites. So, with all that being said, the SLP wants us to repeat the barium swallow study in 6 months to see how he's doing then. Hopefully we will have started Dr. Patel's program by then and made some progress with eating orally.

So, that's the latest. Caden is not aspirating but he has a delayed swallow which puts him at risk for micro aspiration. I would appreciate prayers that he will progress quickly and do well with eating by mouth.