Testing, Testing...

February has been a blur. At the beginning of the month, Rémi spiked a fever prompting a round of antibiotics to treat for potential sepsis and a stay in an isolation room. He was cleared of that, only to then pull out his own g-tube (balloon fully inflated!) If you're not 100% sure what I mean by that, trust me when I say it's a very impressive accomplishment!

Shortly thereafter, Rémi had two Code Blue respiratory events, a short stay in the Critical Care Unit and a plethora of tests to try and get to the bottom of the two emergencies.

Here's Rémi’s bravery on display during some of his many tests.

#1 Echocardiogram

Reason: to determine if his heart was the underlying cause of the two respiratory events.

Every fetus has a blood vessel in their heart that shrinks and closes shortly after birth. Read more about PDA and PFOs. When Rémi had his TEF surgery, he had imaging that showed this vessel in his heart hadn't yet closed. This isn't abnormal in an early term birth, and we weren't worried about it causing any further problems -until his respiratory events.

Results: Essentially normal.

Rémi's heart was ruled out as the cause of any breathing difficulties. His PDA and PFOs are smaller than when he was born and should close on their own with no intervention. A big relief!

#2 Contrast studies

Reason: to determine if his surgery site opened and if there was an additional fistula they missed during the first surgery

This was a 2 part test.

Part 1: insert contrast dye into his replogle tube to see through live xray where the dye traveled.

Results: all clear! The dye stayed in his esophagus. This is great news as it showed no additional fistula.

Part 2: insert dye into his gtube and slowly invert Rémi. Yes you read that right. We tipped him slowly head down to let gravity do the work. All while trying to keep him calm and still for the imaging. He was surprisingly cooperative-once he got over the cold hard table we placed him on.

Results: all clear! The dye stayed in his stomach and lower esophagus. This let us know that his surgery remains intact. There is no hole and no further reconnection to his trachea.

So what's the problem? Why the respiratory events?

We think this is a two fold answer.

1. Tracheomalacia

It turns out that babies with TEF, like Rémi has, have a soft airway. His trachea isn't rigid like ours and can compress and change shape. If he's on his back, crying, or really exerting himself, his trachea can compress. This causes him to panic, furthering his distress and making it hard for him to catch his breath.

We can help him with this by positioning him on his side, or sitting up and keeping him calm (easy for a baby right?! )

2. Lollipop shaped pouch (yes, I made up this super technical term. Seriously though it looks like an upside down lollipop)

This is actually a catch 22. On one hand, his upper esophagus has grown! This is the BEST news ever, meaning he is getting closer to his next surgery.

On the flip side, the bottom of the esophagus (or his lollipop shaped pouch) is big and collecting his saliva. As it fills, the weight pushes against his soft trachea making the tracheomalacia worse.

Again, this is all about positioning him and making sure his replogle is working in tip top shape so it can drain his saliva out. If it stops working, his saliva pools and eventually spills over. Which is exactly what caused his first code blue.

There's a saying that knowledge is power. Armed with this new information about Rémi, we can better support him and keep his airway safe until his next surgery.

Hopefully, we can avoid any further codes or respiratory distress. We are working on strength for his head and neck so he can sit up more comfortably, and modified tummy time. He's such a champ with these new positions. He will be holding his head up in no time!