This is the second part of my story. To read the first part, click here.
After consulting with Dr. James Prebis, a pediatric kidney specialist, Dr. Scott re-entered the room. While Dr. Prebis was concerned about Aly’s kidney failure, he also was worried that there may be something else going on because HUS patients are typically babies and young children. In other words, in the world of pediatric medicine, Aly was considered too old to have HUS.
Based on her staggeringly low platelet count, they consulted with hematologist-oncologist Mohammad Talaizadeh, or Dr. Talai for short, on whether Aly may have an even more serious condition called TTP (thrombotic thrombocytopenic purpura). This rare blood disorder causes multiple organs to shut down (i.e., heart, kidneys and brain). It also can be caused by cancer. The doctors wouldn’t be able to pinpoint the disease, however, until after they received the lab test results, which would take two to three days. Neither option seemed good, but after learning more about TTP, I started praying that it was HUS. I also braced myself for an angst-ridden two days of not having a confirmed diagnosis.
It all felt like some horrible nightmare and I couldn’t wait to wake up from it. How could this have happened to my normally healthy daughter? I couldn’t believe it. And one of the worst parts was, there was nothing I could do. We just had to wait and see. The fact that she was in such capable hands offered some small comfort, but not enough to erase the gripping terror I felt.
Since only one parent could stay overnight in her room, Aly’s dad and I decided that he would stay the first night and then we would alternate. After Aly fell asleep, I drove home and sobbed so hard in my husband’s arms that I could hardly breathe. He comforted me until I finally fell off to a restless sleep. I hurriedly showered the next morning so I could get back to the hospital. This time, my husband, Dave, drove me since I was in no condition to drive.
As I walked into Aly’s room in the PICU, I couldn’t believe how frail she looked. I kept trying to carefully focus on every word her doctors uttered. She had so many doctors involved in her care – a team of intensivists, a kidney specialist, an infectious disease specialist, a hematologist, a surgeon and a cardiologist.
They had decided that since TTP is the more dangerous of the two diseases that they would treat her for that first. That meant, in addition to kidney dialysis, she would need a procedure called plasmapheresis, which would remove antibodies from her bloodstream. In order to administer either of these treatments, however, she needed a central line inserted in her neck. I couldn’t bear to think about my little girl who has always been so terrified of even a flu shot, having to experience surgery to insert a port in her neck.
Before performing the surgery, Dr. John Crow needed to arrange for two bags of AB-negative plasma to replace the blood she may lose during the procedure. This turned out to be a bit of a challenge, since Aly’s blood type is so rare. Fortunately, he finally acquired the two bags and she was wheeled into surgery.
I couldn’t focus on anything while she was in surgery. I have never been so filled with fear, nor felt so helpless. She was at high risk for surgery because of her low platelet count. While waiting with my family, I kept churning over the same two questions. What if she lost too much blood? What if she died?
A while later, we received the news. Aly pulled through surgery, and Dr. Crow only needed one bag of the plasma. I felt a huge emotional weight being lifted. Unfortunately, this harrowing experience was far from over.