The Butterfly Chronicles: Chapter 4 "Looking for Answers"
Updated: Dec 10, 2021
(Read Chapter 1 here)
While Hannah’s musical interests expanded, her physical challenges became more complicated. We visited many specialists from the Carolinas to Pennsylvania. I spent hours researching her condition reading medical journals. I hoped that I could find answers for Hannah as well as other children with her condition.
There were always tests to run, but never any real answers. One bright spot that enabled Hannah to grow came through the treatment of a very special doctor and even more special human being, Dr. B., an endocrinologist in Charleston, WV. Although Hannah didn’t like the many labs that were required with his care, his treatments did improve Hannah’s quality of life and helped her to grow.
As we explored pediatric GI doctors, there was a name that kept coming up. It was also a name that appeared on every peer-reviewed journal article I read. We will simply call him Dr. D. We discovered that he was in Columbus, OH at Nationwide Children’s Hospital. Hannah was eleven years of age on her first visit to see this exemplary doctor. We were excited and nervous. Just getting an appointment with him was a big deal. He had a team of more than a dozen other pediatric GI doctors that worked under him. If anyone on this earth could help Hannah, perhaps he could.
We drove up to the hospital, which was a conglomeration of several tall modern looking buildings. We were greeted with a logo that had four butterflies, including the largest, which was blue. Of course that was significant. It wasn't exactly like the blue butterfly in my vision, but it was close. I also thought it was interesting that there were four butterflies and we were a family of four. We later found out that this was a new logo for the hospital that had only recently been unveiled. These are all butterflies that were native to Ohio. It turns out that one of them was a fritillary like the one that visited Hannah in 2008.
Unfortunately, Dr. D. did not have any solutions for Hannah. He discouraged us from going the route of a transplant. After reviewing her records and discussing her condition with us, he told us that Hannah had the incurable chronic intestinal pseudo-obstruction (CIPO). He pushed for conservative treatment and continued nutritional support via TPN. He did have a couple of recommendations for meds to help with the bowel pain.
The bowel pain was one of the worst things that challenged Hannah. It was progressively getting worse as she got older. Opiate-based pain meds were not an option, because they would cause further complications in her intestines. Hannah would have blockages and then cramps that would cause her to scream in agony at times. Dr. D. was able to successfully treat this pain with anti-spasmodic drugs--at least for a while. She was hospitalized there a time or two over the next year and a half. One of these hospitalizations involved meeting with a surgeon about the possibility of removing some of her bowel. I felt that this was the best answer. The doctor disagreed and explained that once these bowels were removed, they could not be replaced and there would then be other complications.
We had many appointments there, as well as appointments to other specialists in West Virginia. Every week, her local pediatrician, Dr. J, offered oversight for Hannah’s labs, nutrition, and other needs. He always did a wonderful job and helped to enable Hannah to stay out of the hospital.
After a while, the drugs gave Hannah less relief as her condition worsened. The pain would get so intense that there were times she prayed that God would take her. While Hannah experienced intense pain, Kellie and I felt another deep pain that is still with us today.
We saw more doctors, made phone calls, tweaked meds, all to no avail. Then in the early part of 2015, at the age of 13, Hannah’s issues became severe enough that we knew something had to give. The pain was getting worse and the meds wouldn't help at all. We took her back to Nationwide’s for an appointment, but we were packed for a longer stay. Dr. D. admitted Hannah. We had no idea how much trauma we were about to face or how long we would be in Columbus, but things were getting desperate. The next several months were some of the most difficult any of us would ever face.