Boston Bound

After 4 months of research and many many phone calls, we decided to go to Boston Children’s Hospital to treat Lucas’ lower congenital esophageal stricture. Boston Children’s Hospital is ranked #1 nationally and even internationally for almost every pediatric department. We feel blessed to have found surgeons from the top ranked pediatric hospital who are eager to take on Lucas’ case.

Dr. Michael Manfredi is our lead surgeon from the Esophageal Atresia Treatment Program. We are waiting on the final dates which most likely will be in July or August. The doctor wants us to be prepared to be in Boston from 4 to 8 weeks. It could be shorter or longer. Time will only tell.

Dr. Manfredi will use an Endoscopic Ultrasound (EUS) to image the lower stricture. Funny story, when we started our research back in February, all of our local surgeons told us the small size EUS imaging we wanted/needed was only available in Japan and a few hospitals in Europe. They even joked that maybe we should plan on going to Osaka, Japan if we wanted the imaging. We took it upon ourselves to call around and eventually found out that Boston Children’s Hospital has the small sized EUS. Just an other example, of how we never accept the word “no” when it relates to Lucas’ medical care. We will always find what Lucas needs!

Dr. Manfredi will image the area. If it shows trachea material, then Lucas will need to have a difficult detailed resectioning of his esophagus to cut out the trachea material. Lucas will have a new scar on his back from where they will cut him open. Plus, most likely they will break a rib or two to get to the area. We hate to even think of how much pain Lucas will be in.The biggest fear is there is a large artery near the stricture. So the surgeons need to be extra careful to avoid nicking the artery. To be honest, we are praying long and hard that we don’t need to go this route.

Our hope is the imaging shows fibrous strong material which has a good chance of reacting positively to a balloon dilation with deep cuts into the esophagus. Then, they will put a stint in to hold that area open for 1 week. During that time, Lucas will be in a good deal if pain. So he may be put in a medically induced coma for a few days and his nutrition will be received via iv. No oral food will be permitted for a week or more.

Before deciding on Boston, Bryan & I figured out ways to get well known GI surgeons from the following top ranked pediatric hospitals to review Lucas’ case: Mayo Clinic Children’s Hospital (MN), Denver Children’s Hospital (CO), Texas Children’s Hospital (TX), Michigan Children’s Hospital (MI), and Cincinnati Children’s Hospital (OH). It was amazing how interested the surgeons were in Lucas’ case. We found out that there have only been 60 documented cases in the world of Lucas’ rare form of congenital esophageal stricture. So, all of the surgeons were eager to have Lucas go to their hospital to document his progress. In the last 3 years, Boston Children’s Hospital has worked on 5 children from all over the world with the same type of congenital esophageal stricture. So, Boston has the most experience. We feel extremely confident and at peace with our decision.

Now, we are starting to see the Lord’s plan a bit more clearly. Jesus Christ has big plans for Lucas!

10 thoughts on “Boston Bound

  1. Wow! We will keep praying for him, and I’m glad you found a good team in Boston. If Bryan would find having a nearby person to talk to, our friend Brook lives in the suburbs there.

    • Prayers are so appreciated. Bryan will reach out to you if he decides talking to Brook could be helpful. Thanks for all of the help & prayers!

  2. So glad you have found out all this information, surgeons, equipment, etc. Lucas is one fortunate young guy to have such dedicated, intelligent and loving parents! We will keep praying. We know God will continue to guide you and give you wisdom and peace on this journey.

    • The Lord has strengthened our minds and hearts to be the best possible parents for Lucas. We give him all of the glory.

  3. So happy to hear of all the medical information that you have gathered on Lucas’s condition & the team that you are employing for the best possible treatment options. Your family is in my prayers everyday, and Lucas gets his own special prayer. Hugs & prayers to all of you.

    BTW – Jill … You never could accept no as an answer 🙂

  4. Your dedication and persistence are out of this world! Lucas is beyond lucky to have such amazing parents as you two. Prayers will continue to be sent telepathically from Hong Kong to Arizona:)

    • Thanks Yvonne! Our doctors are always kind & compliment us on being so active. I can’t imagine a parent behaving any different.

  5. Wow! Exciting and nerve wracking all at the same time! We’re sending our love and prayers like always! Thanks for the updates!😘😘😘😘

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