Tuesday, May 11th, 2021

Day 11 - Swallow Study

We returned to the hospital.

Only this time it was on purpose - and for a study that both Jennifer and I had been looking forward to receiving information about. 

Declan, his entire life, had always sounded a bit phlegmy when he cried. Our pediatrician chalked that up to "tiny humans having tiny airways." 

But Jennifer, being the professional SLP that she is, knew that something more sinister could be plaguing our little boy - silent aspirations.

Originally, we thought Declan's failure to thrive was attributable to acid reflux, something that many babies experience early on in their lives. Initially during our hospital stay, doctors assumed the issue to be GERD bothering our little boy's belly before breastfeeding. 

Jennifer was more concerned about a condition known as silent reflux. Wherein the reflux from our tiny tot's tummy tossed up, but never out, the throat threatened to torture his trachea. 

I'm don't remember which doctor told us about this, but they explained, "Sometimes babies just suck at doing stuff." 

That includes eating. 

Underdeveloped gastrointestinal system, misfiring synapses from a developing central nervous system, and a muscular-skeletal system that - shall we say - could be thrown a bone. 

All of these systems needing to work in concert to do the basic survival need - eat. Specifically for babies, the ability to suck and swallow. Declan always choked when he drank, but his lungs sounded clear at every pediatric check-up. 

One of our many concerns, was that Declan's cancer could have found its way towards his throat, causing him to suffer from an inability to eat efficiently. Fortunately, during his MIBG scan and staging, there was no sign of the cancer anywhere near his neck.

Jennifer knew, deep down, that Declan was aspirating. We just never had any hard evidence to prove it. Today was the day that we finally get some answers.

To do this, Declan needed to drink a barium solution while an SLP and radiologist observe how he swallows on an X-ray. 

Image from North Shore Pediatric Therapy

While I wasn't present in the room at the time of the swallow study, the results came back pretty clear. Jennifer was right. 

I mean, as a husband, I generally defer to my wife and concur that she is right 100% of the time, but she called this issue long before any doctor thought it could have been a possibility. Jennifer's magnificent mommy mind managed another meaningful medical professional miss. 

These aspirations could spell disaster for an immunocompromised child. Catching pneumonia while your immune system is out of commission could cause some complications. 

This would mean that Declan would have to start taking thickened liquids, or as I call them, Thickuids™ (or another alternate "Thiquids", but that appears to be some type of ant-bait).

Just as soon as we started to depart from the hospital, we saw the orders come through: Declan was ordered on thickened liquids as a result of his swallow study. Just one more thing to deal with.