Give Her Air

Four weeks post Tounge Reduction surgery and gracie continues to need more respiratory support.

She went from 4 liters of high flow to 10 liters of cpap in a 24 hr period. Her work of breathing continued to be extremely labored whenever she was awake. She was starving for oxygen and pleading with her eyes for us to make it better. 

Nothing was quite making sense. Her lungs are good, she is no longer swollen from surgery, but she still couldn't breathe. Something must still be obstructing her. The doctors decided to do a bronchoscopy to get a better look of what is going on. 

In order to make sure she didn't need to be reintubated before the bronch (they can get a more accurate picture not intubated), they decided to keep her sedated all day and all night. When she is fully relaxed, she is much more comfortable and able to get oxygen in. 

The bronchoscopy went well and was successful. Her airway team came to chat with us post op and did a very thorough job explaining everything. 

To sum it up as best as we can: 

Her tongue surgery was a huge success. Dr. Taylor and his team did a great job taking what they could but there's just not enough space behind her tounge in her mouth. The base of the tongues is compressing the area near the epiglotus by her vocal chords. She also has a Dynamic airway collapse on exhalation, but that's a secondary problem and could be related to the narrowing behind her tounge. 

Basically she is forcefully breathing in to bypass her tongue and these huge, forceful breaths are causing her trachea to collapse. 

We also know the area below the vocal chords looks good structurally and her lungs are kicking butt. 

Next step is plastic surgery, Dr. Taylor, comes in to see if she is a candidate for a mandibular distraction (surgery to pulling her jaw forward). This would make more room in her mouth and lessen her obstruction. It might fix the breathing, and it might not, but it would help either way. 

She will have to get some scans and measurements done to see if it can even be done without causing more harm than good to her jaw alignment. 

We came to Philly hoping a tounge reduction would solve all of her breathing, sucking, and swallowing issues. We now know that she will most likely need major jaw surgery, a tracheostomy, and a G tube placed. We are so sad for our little girl and are obviously overwhelmed by all of the news.

Please keep Gracie and us in your Prayers. 🙏