Hemophilia B

In February, Parker had to have his tonsils removed. We expected the surgery to go very much like everything else has with our kids, easily. I read blogs about tonsillectomies, and I read all of the horror stories. I was prepared for anything that might happen, at least, I thought I was.

He did not feel well. His surgery went well, but he did not feel well. Everyone said the 4th day would be better, it wasn't. The 5th day would be better, they all said, and it wasn't either. He was losing weight rapidly, his breath smelled like multiple dead animals, he wouldn't speak, and he had no energy. The morning on the 7th day, I took him to the hospital. I knew it just didn't seem right. We loaded him in the van to head to the hospital. As soon as we got buckled in the van, Parker threw up. It was the most foul smelling vomit I have ever experienced. It was all dark brown and there was lots of it. I was confused because he had eaten nothing.

When we got to the hospital, he threw up once more. After that he tried to go to the bathroom, and actually passed out in the bathroom, and I caught him before he hit the floor. I carried him over my shoulder, 67 pounds, 11 pounds lighter than we he had surgery. I made it to the room, he woke up. The doctor arrived and told us that Parker needed surgery again to stop the bleed on his tonsils. We had read about this, we knew it was a possibility. So we prepared quickly, they rolled Parker to surgery, and just 20 minutes later he emerged with his tonsils re-cauterized.

I knew everything was going to be okay. He seemed to feel better, but we wanted to stay overnight just in case. The next day we headed home, and we were told that in 7-10 days the scab would fall off and it was possible but not probable that he could have another bleed.

10 days later. We thought we were in the clear. Parker came into our bedroom in the middle of the night, and he woke us up. I will never forget, "Mom, Dad, I am actively bleeding, it is more than one teaspoon, I believe we should proceed to the ER. Mom, Dad, I am actively bleeding, it is more than one teaspoon, I believe we should proceed to the ER." The whole time he was spitting blood in his hand, and I was quickly shaken from my slumber. I grabbed some jeans, pulled and an old shirt, and jumped into my tennis shoes. We were at Children's Hospital in record time. I am not ashamed to admit that I ran every red light between our house and the hospital.

Within minutes of arriving in the ER, Parker threw up more than 600cc of blood. It was like something from a horror show. The nurses, the doctor, everyone, flew into action. They called his ENT, and decided he would again need surgery. Parker continued to bleed right up until they rolled him into the surgery ward. 45 minutes later he emerged, and I didn't feel like everything would be okay. I was confused, really confused.

The next few days are a blur. I'm not sure when the hematologist was called, but clearly they wanted to check for any bleeding issues, as a tonsil bleed 17 days after the original surgery was extremely rare. Parker was a champ. He was as pale as a sheet, and everyone commented on it. He had lost tons of blood. He eventually had to have a blood transfusion because of lost blood.

The hematologist, Dr. Pais, came in and told us about what he would be testing for. He mentioned several disorders and listed them in order of most common to most rare. Of course, as soon as he left, we began Googling every condition. We realized pretty quickly that the symptoms of hemophilia seemed familiar. We had taken both Parker and Ben to the pediatrician for bruising. I had also called my sister once, while looking at Parker's legs, and told her I was worried someone might think I had been abusing him. Parker and Ben had both had issues of prolonged bleeding for minor injuries, skin pricks, and bug bites. We hoped that it was all coincidental. Unfortunately, the next day, Dr. Pais confirmed our fears. Parker did have a deficiency of Factor IX. Factor IX is a blood clotting protein, this deficiency means that Parker does have Mild  Hemophilia B. We knew then that Ben did too. Blood tests a few days later proved we were correct. Fortunately, Andy did not share this genetic trait with his brothers. He has no factor deficiencies.

What does all of this mean for us? I'm not really sure. No wrestling, no football, no skateboarding, no trampolines, no ice hockey, no rugby, expensive medicine, free summer camp, more doctor's appointments, but other than that there aren't many things changing for our family.

In a few weeks, we are going to a conference to learn more about hemophilia, and what we can do to best care for our kids.

Parker's tonsillectomy scars did finally stop bleeding, and he hasn't stopped talking.