On Monday, we depart for Boston Children’s Hospital. We are both excited & nervous! This trip should completely change Lucas’ life for the better. If everything goes as planned we will eventually leave Boston with Lucas’ lower esophagus stricture stretched which means he can start eating food larger than stage 1 baby formula.
We have many doctor appointments during the first week. Our 1st big surgery is on Friday, 7/18. If the surgery goes as planned, Dr. Manfredi will purposely cut through Lucas’ esophagus to cause leaks with hopes of stretching the lower esophagus stricture site which may be thick fibrous material. The surgeon will leave in a stint to keep the area as wide as possible for the next week. Lucas will have no food orally for a week and instead will receive nutrients via IV. He will be in a good amount of pain so he may be sedated for a bit and then slowly taken off the pain medicine. We are dreading seeing Lucas is pain. However, we know Lucas must have this surgery to get to drink & eat like a normal toddler.
Currently, at 14 moths old, Lucas drinks a bottle every 2 hours for a total of 9 bottles a day. His esophagus is so small that he can only drink a little bit of formula before his esophagus fills up and causes a bottleneck at the lower stricture site. If all goes as planned he may soon start to drink a large volume of formula or even milk at one sitting. I can’t wait for Lucas to have more free time to play!
Boston Children’s Hospital has dealt with 5 children over the last 3 years with similar lower congenital esophagus strictures. 4 out of the 5 cases are complete success stories and the children are doing great! However, 1 child had a significant issue which caused them to lose their esophagus and had to have a complete transplant of the intestines to replace the esophagus area.
We’ve been told throughout the world there are only 60 cases of this type of lower esophagus congenital stricture. So this is extremely rare. We feel blessed to have Boston Children’s Hospital accept Lucas as a patient to their top ranked esophageal program.
I will admit there are moments when we get nervous and scared as to what will happen in Boston. However, we are giving up all our worries to the Lord. Jesus Christ is mightier than any earthly issue. Lord we ask for your strength and healing while Lucas is in Boston. Lord you are an awesome healer and mighty in power!