(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 an incredibly special doctor and an even more special human being, Dr. B., an endocrinologist in Charleston, WV. Although Hannah did not 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, 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 was not exactly like the blue butterfly in my vision, but it was close. God was encouraging us to move forward. 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, including meds that helped manage symptoms, and continued nutritional support via TPN.
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. For a couple of years, Dr. D. was able to successfully treat this pain with anti-spasmodic drugs. 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 bowels. I felt that this was the best answer. The surgeon 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 with 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 on many occasions.
Medications 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 experienced excruciatingly deep pain that is still with us today. Any parent who has helplessly watch a son or daughter suffer can relate.
We saw more doctors, made phone calls, tweaked meds, all to no avail. Then in the early part of 2015, at the age of thirteen, Hannah’s issues became severe enough that we knew something had to give. The pain was getting worse, and the meds would not help at all. We took her back to Nationwide’s for an appointment, but we had 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 ones any of us would ever face.
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