Caden has been referred to the Aerodigestive and Sleep Center at Cincinnati Children’s Hospital . Caden’s local ENT (Otolaryngology / Head and Neck Surgery) specialist has reached the end of his tool belt in terms of treating the swallowing challenges that Caden has battled since birth. Caden will be six years old in just a few months and has never swallowed anything, not a single bite of food, drink of water, not even his own saliva. We still feed Caden exclusively with a feeding tube five times per day including two 10 ounce boluses of water for hydration. The trip to Cincinnati Children’s will connect us with an interdisciplinary team that deals with feeding disorders and upper digestive tract problems among other things. We are blessed to get the appointment scheduled during a week when we were already going to be in the Cincinnati area. We will be tying this appointment into a vacation to Indiana. We were already planning on stopping for a day and visiting the world famous Creation Museum just south of Cincinnati on our way home from Indiana so this appointment works well with our plans.
Caden will be visiting the orthopedic surgeon here at MUSC in a couple weeks. This appointment will include the big discussion about surgery. I wrote a post in late March titled Taking Inventory After MBS that included details about our last appointment with the orthopedics clinic:
The surgeon basically told us that the time has come to ready ourselves for surgery. The surgeon sees the curves in Caden’s back reaching a point where modern medicine calls for surgical intervention. There comes a point with most scoliosis cases where the spine can interfere with the growth and/or functionality of the lungs. The surgeon believes that we are approaching that point with Caden and has recommended that rods be surgically implanted into Caden’s back within the next six months to begin to straighten the spine.
We are not looking forward to this appointment. Surgical intervention for scoliosis is not something that we are looking forward to as it would put Caden on a regular hospitalization approximately once every six months to get the device adjusted as his spine grows.
We would greatly appreciate your prayers for Caden. Sherry and I need prayer for discernment and wisdom as we enter into these next few weeks and months with Caden. Please pray for us as we make decisions that affect Caden’s comfort and quality of life.