This is the final part of my story. For the rest of the story, read part 1 and part 2.
One of the scariest incidents during Aly’s ordeal happened the day after surgery to insert the central line. Aly had had her first dialysis treatment earlier that day, and was scheduled for her second plasma exchange treatment that afternoon. The nurse gave her Benadryl before the treatment to help thwart an adverse reaction like the one she’d experienced the day before.
After Aly had started her treatment and fallen asleep, I went to the waiting room to talk to the PICU psychologist, Victoria Norton. My husband, Dave, and Aly’s dad, Ben, joined us. While we were talking, my cell phone rang. It was one of Aly’s nurses from the PICU. I recognized the urgent tone in her voice and chills shivered down my spine.
We raced back to her room, where she was surrounded by respiratory therapists, nurses and the PICU doctor. The respiratory therapists were trying to normalize Aly’s breathing because she had gone into severe respiratory distress. I ran over to Aly and held her hand. She seemed so fragile and scared. The somber faces on the clinicians confirmed my worst fear. Aly was in danger. Dr. Tirodker said Aly may have had a pulmonary embolism (PE), a life-threatening condition caused by blood clots in the lungs.
I was terrified. Dr. Tirodker told us that the only way they would know for sure whether she had a PE was through a CT scan. Since Aly suffered from acute kidney failure, however, they didn’t want to subject her to the contrast required for the CT scan, since it would likely cause permanent kidney damage. They also had to weigh the risks of not performing a CT scan since PE could be fatal.
Dr. Tirodker kept us informed as she discussed the options with the other doctors, including Dr. Prebis, the kidney specialist, and Dr. Rubin, the head of radiology. I was in shock. Everything seemed so surreal. Every time I felt like I could relax a little, something scary would come up. It was the most terrifying rollercoaster ride I’d ever experienced, and all I wanted to do was make it stop. I wanted so desperately for everything to go back to normal.
After much discussion, the doctors decided to perform a nuclear medicine scan to determine whether they could find a PE. Dr. Tirodker gently explained that although this type of scan is not very effective at detecting PEs, they didn’t want to risk permanently damaging her kidneys since, even if she had a PE, they couldn’t treat it. That’s because PEs are treated with blood thinners and they couldn’t give Aly that type of medication because she was already severely anemic. I felt my breathing catch as I listened to Dr. Tirodker. How could this be happening?
After they wheeled Aly down to radiology for the scan, I waited with my family for what seemed like an eternity. Fortunately, they didn’t find a PE on her scan. After this nightmarish medical drama, Aly started to turn the corner. The next day, her lab results came back and Dr. Talai said that she did not have TTP. I felt like a huge anvil had been lifted from my back. No more grueling, five-hour plasma exchange treatments! We finally had a definitive diagnosis – HUS.
Aly began showing improvement, and every day became a little easier. She required two more dialysis treatments and a total of five blood transfusions before she was finally able to be moved from the PICU to 5600, which is the unit for cancer and kidney patients. Her numbers (platelet, creatinine, etc.) continued to improve, and Dr. Crow removed her central line. Twelve days after being admitted to the PICU, I was able to bring Aly home. I have never been so thankful in my life. While Aly continues to have follow-up appointments with Dr. Prebis, now she only has to see him once a year. To look at her today, you would never know how incredibly sick she had been.Final thoughts
The staff at Akron Children’s Hospital is truly phenomenal, and I am so grateful for their kindness, compassion and expertise. In addition to Dr. Prebis, I would especially like to thank Drs. Pope, Bigham, Tirodker and Malhotra of the PICU; Dr. Bower of infectious disease; Dr. Talai of hematology-oncology; Dr. Holler of neurology; Dr. Crow of surgery; Drs. Scott and Pollauf of the ER; Dr. Holder of adolescent medicine; Victoria Norton; the 5600 and PICU nurses; and the many other staff who provided such wonderful care.
In my job, I’ve always felt privileged to share the stories of our courageous patient families, and compassionate and top-notch medical staff. This experience with Aly gave me a deeper appreciation for the miracles that occur here everyday. While Aly was on 5600, I was touched by the cancer patients I saw on the unit. It struck me that while Aly was nearing the end of her medical journey, many of these patients would be hospitalized for months.
One preschooler really captured my heart. She didn’t have any hair because of her cancer treatment, yet she was always laughing and playing. Aly and I would watch her march down the hallway, carrying a backpack and flag, singing and talking. She also loved being chased by the staff, and pushing her shopping cart down the hall. Little did she know that this playtime activity was really part of her rehab. Watching this precious little one drove home what I had heard the nurses and staff of 5600 say so many times before – that the children have so much to teach us about life.