The Butterfly Chronicles: Chapter 5 "The Darkest of Times"
Updated: Dec 10, 2021
When Hannah was admitted to Nationwide Children’s in early March of 2015, the first priority was managing Hannah’s pain. Then tests began. They were all repeats of tests that we had experienced before. Towards the end of the week, a doctor approached us and said that he believed that they had located Hannah’s problem. I was skeptical, because we had heard the same theory before and she had procedures that failed to bring relief. I described this to the doctor, but he was so convinced that he promised me that one way or the other, they would make sure that Hannah had relief, even if it was short term, following this procedure. It was scheduled for that evening.
While Kellie, Luke, and I nervously waited in the waiting room, we prayed in desperation. It took longer than expected. When the doctor finally came out to talk to us, he looked tired and discouraged. He said that the procedure did not help and that Hannah was in distress and would have to be admitted into the ICU. When we got to the ICU to see Hannah, she was struggling to breathe and was greatly distended in her abdominal area. It would be a long weekend of different ICU doctors, tests, theories, and watching Hannah struggle.
I kept telling doctors that I felt Hannah needed part of her bowels removed. None of them were biting. Then early the following week, I ran into Dr. D. in the hospital lobby. He asked how Hannah was doing. I explained. He said, “We need to get those diseased bowels out of her. I will go up there and talk to the ICU team.” Surgery was scheduled for later in the week. They chose the best surgeon on their staff – Chief of Pediatric Surgery, Dr. B.
This time, our wait was even longer. While Hannah was being cut on, Luke and Kellie and I waited and prayed. Hours later, a female surgeon that looked like she had been doing procedures all day on a war-torn battlefield came in to see us. She breathed a deep sigh and said, “She’s ok. We aren’t finished. She lost a lot of blood.” She went on to explain what they had done, why they couldn’t do it all at once, and what was next. She also explained that Hannah would be kept sedated for several days. Her wound would be kept open by means of a wound vac and they would resume in a couple of days once her system was ready.
When Kellie and I went into the room to see Hannah, it was shocking. There in the middle of the room, surrounded by what seemed like a dozen ICU staff, was Hannah. Her abdomen was still open. Bright lights shone down on her poor, dainty body. Neither Kellie nor I could handle the scene; we both decided that we would stay at the Ronald MacDonald house that evening with Luke. (Up to this point, we took turns staying with Hannah every night). We were physically and emotionally exhausted. She was in a deep sleep. There was nothing we could do to help and they would be working on her all night.
Over the next several weeks, there were far too many complications and procedures to describe in a blog article. There were many surgeries and tests. Hannah was kept in an induced coma for several weeks. When the surgeries were finally over, they woke her up. We were so excited to see her. We missed her. Our reunion wasn’t quite what I expected; Hannah was weak and disoriented. A few days later, Hannah began running insanely high fevers and they discovered abscesses and other problems that needed addressed. Hannah was to go back into an induced coma. When she was awakened several days later, she was even weaker and more disoriented.
Hannah fought infection after infection. There were so many teams of doctors that would come through each day, each with their own specialty. Then one day a team that we had not seen before came into the hall outside her room. They asked to speak to us in a separate room. My heart sunk. They proceeded to tell us that Hannah was in congestive heart failure. They could not tell us why nor could they give us a prognosis. The best they could do was say that it might get better and it might stay the same or it might take her life. The odds at this point were 1/3 each. We would know more after a couple of months. They said if it wasn’t better in 2-3 months, that it would not get better. If we saw things continue to decline, then her heart condition would likely take her life.
During this time of one gut punch after another, we had many visits from friends and family. Kellie’s parents made a number of trips and helped with Luke. My mom spent a lot of time with us. Her calm faith gave us strength. I am grateful that my dad was able to lend us his dear wife for these desperate times. Visits, calls, texts, cards, and prayers from other family members and friends helped provide valuable support during this storm.
Luke was also great. He was nine years old at the time. He gave us so much emotional support and a break from the ICU madness. Once we resumed spending every other night in ICU with Hannah, those alternate nights with Luke at the Ronald MacDonald House (RMH) became a necessary release for us. He was concerned about his sister, but he was also at an innocent age; he could let loose and just have fun. At this enormous RMH, he played hockey and arcade games, enjoyed their “tree house,” and watched movies. At one time, my sisters offered to take Luke home and stay with either of them. He replied, “I am not leaving without my sister.”
Hannah was in ICU for about two months. I cannot imagine getting through this time without the support of friends and family. One of our friends started a prayer page on social media for Hannah that reached around the world (thanks, Ann). Money began to come to us from churches and friends. Musician friends back at home were planning fundraisers around the community (thanks to Brian, Hunter, Pam, Ben, Matt, Ron, Jackie, and many more). Other friends took care of Hannah’s many pets (thanks, Meg and Kathy). “Praying for Hannah” began to show up on business signs throughout the community. Although we missed a lot of work, our financial support was there. Raleigh County teachers donated vacation days to Kellie, and her principal and colleagues showed support in many ways. Our prayer support was overwhelming. We will never forget this outpouring of love and support.
Towards the end of our stay, I ran into a doctor in the cafeteria. He said that Hannah was blessed to have such loving and supportive parents. He then gave me some advice. He told me that Hannah’s case was one of the most complex that they had ever faced. He also said that it is ok if we get to the point that we decide that enough is enough. He said that sometimes doctors will do everything they can because they can, even when they shouldn’t. I understood what he was saying. The thought had been on my mind for weeks. I nodded and smiled in agreement. The lump in my throat restrained my words.
Getting discharged was a really big deal. There were multiple conferences about her situation with teams of doctors and social workers. There were concerns about how complicated her home care would be. We were told she might not make it. We were encouraged to reach out to Hospice once we got home. Still, when Hannah was discharged, it was an exciting day. My dad drove to Columbus and gave us a ride. Hannah was stretched out in the back row of his SUV. At this point, we just wanted peace, rest, privacy, and to be in our own home. We were ready to leave the blue butterfly logo in our rearview mirror, for now.