This past Monday Emmett went in for his routine esophagus dilation. This is an out patient surgery that has been performed on Emmett every 2-3 weeks for the past year and a half.
Emmett has had a partial removal of his esophagus, a portion of his stomach was used as a graft to make up the damaged and removed esophagus. The reason for the dilation's is to open up strictures that have formed inside Emmett's throat. Strictures are usually caused by scar tissue at the repair sight.
The issue is, every 2-3 weeks the esophagus closes up, this makes it impossible for Emmett to be able to eat by mouth. The option to do so in the future is not looking optimistic with the esophagus he has currently. Look at he images below and you will see why:
Here is a diagram of the esophagus and stomach. The 3 red dots indicate where Emmett's strictures occur. The red dot in the stomach is the placement of his g-tube.
The upper left image is Emmett's esophagus right before Dr McOmber started to dilate. The lower left is after the esophagus has been dilated, which is still only about half the size it should be. The dilation process has to be performed very carefully as the tissue is still very fragile.
We have had a care conference here in Phoenix, Michael and I met a terrific, well experience surgeon who may possible perform surgery on Emmett, assisted by Dr Egan.
We are waiting to decided on when and where the surgery will be performed until after we return from Cincinnati Children's Hospital at the end of the month.
The surgery we have been discussing for a while is called a Colon Interposition. Think on the lines of a transplant. Emmett's esophagus will be completely removed and replaced by using a good portion of his colon. The colon and the esophagus have a similar sphincter like muscles that will help with the mobility to move food down to the stomach when Emmett swallows.
I sigh as I think about the surgery being more invasive than those he has had in the past. However with much thought, research, lots of praying and multiple detailed discussions with physicians, Michael and I have decided that this will be the next milestone in Emmett's care. This will give him the chance to some day be able to eat by mouth.
I get the question, so why are you going to Cincinnati Children's if you might have the surgery done in Phoenix? For many reasons, Cincinnati Children's has a terrific multidisciplinary team who focus on the lungs, trachea and esophagus. Dr Rao, Emmett's amazing pulmonologist is hoping to receive good insight on Emmett's lungs and trachea in Ohio. I have not spoken much about his lungs because the esophagus is kind of the blaring issue right now. However Emmett has severely weak and fragile lungs due to the battery ingestion. We will be working with a world renown pulmonologist in Cincinnati.
During the procedure, Dr McOmber noticed this in Emmett's esophagus. Several staples that were used during the partial reconstruction of the esophagus last year, have surfaced. Notice the letter is it indicating??? "R" for Rauch. We had to laugh about it!
Ethan receives the best big brother award! He is so kind and helpful with Emmett. Ethan watches me carefully each time I connect Emmett up to his feeding pump. Yesterday he wanted to try and do it himself, Emmett had the giggles as I think Ethan was tickling him while trying to connect the attachment. Brothers are the best!
Thank you for all of the support and prayers for our family and especially Emmett. We would love it if you could think and pray for us during our trip to Cincinnati the last week in August. Thank you, thank you!
Go Emmett, Go!
that is so exciting that a surgery might offer a more permanent solution for the little guy so you can focus on his lungs! I wish you continued strength during this decision and waiting time!
ReplyDeleteApologize if you already got this, but I am someone who has had this surgery, and happy my parents decided to do so. Indication was lye ingestion at the age of two. I am a practicing pediatric anesthesiologist now, and have had a very fruitful life, despite all the limitations put infrnt of me.
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