The Butterfly Chronicles: Chapter 6
It was nice to be home. Hannah was very weak at this point. She had to learn to walk and play violin again. She didn’t have much of an appetite, but she was thirsty. A local news group came by to do a story on her. She played a slow and weak rendition of a couple of her favorite tunes. She didn’t show as much interest in her puppies as we had expected.
About ten days after we returned home, Hannah began having acute pain in her upper abdomen. I thought it might be her gall bladder. We took her to a local ER where it was discovered that she had a massive blood clot blocking 90% of the blood flow to her liver and spleen. She was airlifted back to Nationwide Children’s. Kellie, Luke, and I scrambled home to quickly get a few things and then took off.
When we arrived, Hannah was frustrated that it had taken us so long to get there. (She just wasn’t thinking about the time difference in flying and driving). She was in critical condition; her liver enzymes began to climb exponentially. A couple of days later, a doctor approached us and explained the dire situation. With our permission, they were willing to try an emergency, heroic procedure. They explained to us the risks and the fact that there were only a couple of interventional radiology surgeons in the country that would even try such a procedure. We were told if this didn’t work, that she would not make it to the end of the week.
My mom was with us in the waiting room during the procedure. We waited and prayed as usual. The doctor came out and explained the impossibility of the situation. The massive clot had calcified and would become a permanent part of her anatomy. There was nothing else that could be done. He took us back and showed us x-rays so that we could visualize what he was telling us. This T-shaped clot started in her superior mesentery vein and completely blocked her portal vein in both directions to her liver and spleen. A catheter was sent through her jugular vein, into her heart, through her liver tissue, into the portal vein. He had tried to move a catheter past the clot with the hope that they could drip TPA (a blood thinner) upstream from the clot. He said it was impossible to get the catheter to the other side of the clot because it had calcified. To force it might perforate the vein and she would bleed out. The vein was too big to try to come in from any other angle. We were out of options.
We wept, sort of. It was the kind of crying in which you feel dazed and the body cannot produce a lot of tears. My mom hugged me and said, “Ryan, I am so sorry.” Looking back, I realize how traumatized we all were. How much more could we take?
My mind was numb. We met Hannah back in her ICU room a little bit later. It was a long night – one during which family and friends were urgently praying for Hannah’s life to be saved. We knew we were at a crossroads, and only God could preserve her life.
The next day we were given a report that her liver enzymes were dramatically improving. Doctors did not know why. Scans and tests demonstrated that Hannah had suddenly grown peripheral or collateral veins around the clot to supply blood to her liver. This was the first of three miracles that would take place as God intervened.
Collateral veins do sometimes grow in the body when injuries or something like a clot obstructs blood flow; however, they do not grow that quickly. Also, they do not typically grow in such a way that they can carry the massive amount of blood flow that a major vein like the portal vein can carry. There is much that science is still learning about the body’s ability to grow new veins, but these things take time. There was no indication that Hannah had these veins growing in the x-rays or live images from the day before.
Within a couple of days, Hannah stabilized and discussions about discharge began once again. Once we got home this time, two weeks after being airlifted, we were there to stay. The trauma that we had all experienced would stay with us. I still get anxiety just thinking about it; just driving by any hospital causes my heart to beat a little faster and my neck to tighten.
We did have some follow up visits. The first one to Columbus was about 6 weeks after our discharge. They took a look at her blood clot. It was still there. A hepatologist told us that these collateral veins would not last forever. We were repeatedly told that the clot was a permanent part of her anatomy. These little veins couldn’t carry the load forever. They would eventually burst and she would bleed out. We prayed and updated folks on her prayer page about the news. We knew that hundreds (if not thousands) of folks were praying, many from around the world that had never met any of us.
Back at home, we were seeing a pediatric cardiologist every month. Her congestive heart condition was not getting better. In fact, the measurement of her ejection fraction showed that it may be getting worse. However, one day, Hannah was getting an echocardiogram. The usual technician was getting the readings with the ultrasound machine. She knew about the calcified blood clot. We usually looked at it together during this procedure. She was moving the wand over Hannah’s abdomen and asked where the clot was. We realized that it was gone! She was the first to see it. We went to Charleston to talk to a surgeon about another matter and discussed the disappearance of the clot with him. I questioned, “This almost seems like a miracle doesn’t it?” He answered, “No, it IS a miracle.” This just doesn’t happen.
A couple of weeks later, it was confirmed at Nationwide Children’s that the clot was gone. The doctors there had no scientific explanation. I guess that sometimes things happen that defy explanation. We will forever be grateful for the heroic efforts and kindness shown to us at Nationwide Children's Hospital. Unfortunately, Hannah's problems were too big. Thankfully, God still had a plan for Hannah's life.
To be continued…