A lot to swallow

By some stroke of luck or major miracle, Cayden had a swallow study done on Tuesday.  I'd been trying to get a hold of someone at the Swallow Disorders Clinic at Children's Hospital since last Friday.  After a couple days with nothing but voice mail and no return phone calls, I got through to a live body on Monday.  The live body told me they would email me a packet that I'd need to fill out and return, then someone would review it and eventually call me back to schedule an appointment if they determined we actually need their services. At that moment, their first available appointment wasn't until late August, over two and a half months from now.  So who knows how long it would have been if I just settled and said "o.k." 

Persistence and a few tears seem to be the key to getting help sooner rather than later!  Because of the issues Cayden has been having with the Simply Thick, I didn't feel like we could wait that long, so in frustration, I broke down, started crying, and asked if there was any way they could expedite the process and get him in sooner.  At that time, the live body said she was sorry, but she didn't think so, but offered to put me through to her supervisor.  Yes, PLEASE!!  I got supervisor's voice mail and my hopes were dashed, but I left a message anyway. 

Tuesday morning, Jackie, the lead person in the Swallowing Disorders Clinic, called back.  She was very empathetic.  She listened to my story and gave me great advice and up-to-the-minute information about the Simply Thick issue, but unfortunately, she didn't think she could get us in for a swallow study until August.  At that point, I was pacified by having some reassurance that continuing to use Simply Thick was o.k. in Cayden's case and I wasn't as concerned about having the study done immediately.  Jackie said that since Cayden was so young, she'd put our name on the urgent list and if something opened up, they'd let us know.  Less than two hours later, the phone rang.  They had a cancellation and wanted to know if I could come in for an appointment at 2:00 that day!  I wasn't sure how I was going to swing it on such short notice - Jamison had just gone down for his nap and hadn't eaten lunch.  I hadn't taken a shower in three days.  I had to get all of Cayden's milk prepared so they could use it in the study.  I had to pump.  I had to eat something.  But amazingly, and with the help of our savior daycare lady, Mayra, I pulled it off.

The swallow study was kind of cool.  They mixed my breast milk with barium, sat Cayden in a little seat, I fed him the bottle, and they pummeled him with continuous x-rays and watched the milk travel its path on a real-time image display.  The good news is that he is not aspirating while consuming thin liquids.  The bummer is they can’t ever determine if he may be aspirating later, if things come back up with his reflux.

The appointment was well worth the time, though.  I got to sit and talk with Jackie and another speech therapist for a good hour or more.  Both of these ladies have extensive experience with swallowing and Simply Thick and preemies.  They have been keeping constantly updated on the Simply Thick/FDA issue.  The bottom line is that Cayden should be fine to continue on Simply Thick, especially if we’re only using it at ¼-strength.  The FDA warning says that children currently in the hospital or who have been discharged less than 30 days should stop using it. Because Cayden has been home for three months now, he’s proven that his system can tolerate it and he’s past the age for being at risk for necrotizing enterocolitis.  So the recommendation from Jackie is to continue to manage his reflux with ¼-strength Simply Thick and then in a couple of months, once he starts being able to sit up on his own, we can try weaning him off of it altogether without worrying that he might aspirate. 

I’ve been trying to type this update for three days now, but just haven’t had a chance to finish.  Jason came home at midnight on Wednesday night and is leaving again in a few hours, so I’ve been running ragged for the past six days and now I’m trying to catch up on everything in the mere day and a half he’s home before leaving again for another five days.  But at least now everyone has the latest info:  we finally got a swallow study done and Cayden seems to be doing well again now that he’s got a little thickness back in his milk!