Monday, April 30, 2012

An aggressive move for Emmett's care

Emmett went into Phoenix Children's for a routine out patient surgery , an esophagus dilation, today. Emmett's esophagus has been repaired in different area's multiple times. It is incredible what Dr Egan and his partner's have been able to do in saving Emmett's life and trying to preserve the original esophagus. We are hoping that it will continue to work, however we have had the discussion of possible complete Reconstruction. The plan for now, it to give his body time to heal.

The location's where the esophagus was repaired, scar tissue has built up, forming strictures. Dr Egan and also Dr McComber have been carefully working on stretching the strictures every 3 weeks for over a year now. The dilation procedure is not like most, Emmett's esophagus tissue is still very weak and fragile. To dilate, process must be done carefully, to prevent tears .
The dilation's however, is not proving to show much improvement as we hoped. Dr Egan and Dr McComber are constantly doing research on how to improve the issue.

This is an image of the esophagus and stomach. However Emmett's stomach does not look like this. It has been surgically altered to repair the esophagus and prevent reflex. Emmett has multiple complicated area's in his esophagus. The red dot is the most concerning area.

These are images of Emmett's esophagus. Notice the picture on the lower right, the opening is nearly closed off. That is the what Emmett's esophagus looked like this morning before the dilation. The image on the bottom left is what it looks like after the dilation. In 3 weeks, the esophagus will be once again be a narrow opening.

The narrowing of the esophagus does not allow Emmett to be able to swallow his saliva. The result is that the saliva leaks over into the airway, trachea. The complicated airway that Emmett has, does not allow this body to protect his lungs from saliva that spills over. The result is aspiration which leads to pneumonia, continuing to damage this lungs.

We still have a long road ahead.Thankfully, Emmett has a strong group of Physicians who are looking out for his best interest. Dr Roa, a phenomenal Pulmonologist, Dr Egan and Dr McComber, suggested today, that it is time for us to get a second opinion. I am grateful to them for suggesting this. The idea is to have a second set of eye's to view Emmett's case and suggest their medical opinion.
The verdict to were we are going.... Cincinnati Children's Hospital, which is rated one of the top children's hospital's in the country.

I will be busy making phone call's checking insurance coverage, airline arrangement's, hotel's and doctor's appointments. 
First on my list, call the airline and see if they will be comfortable with a trach ventilated child on oxygen riding on the plain. We hope to have a nurse come along with us. If the airline doesn't feel comfortable with Emmett's condition on the plain, then I will look for a medical plain to fly us out to Ohio. 

Big steps ahead. We pray everyday for guidance from the Lord to know how to help Emmett improve and to heal. I feel like in a way I have been prepared for this. It is an aggressive move, but both Michael and I feel at peace and know it is what needs to be done!

Go Emmett, Go!


  1. Can I help with hotel rooms? I can normally get pretty great deals and would love to help you... Let me know. You can email me (

  2. We will be praying for you guys! Love youQ

  3. Thanks for the parenting tip I wasn't aware of how much damage a battery can cause. However from reading Emmett's story has inspired me to keep a close watch on my son & what he puts into his mouth.My heart & prayers goes out to you & your family. Again thanks