Tuesday, November 10, 2009

Kawasaki Disease

I guess it has been about three years ago hat Nature Girl took an emergency trip to the hospital. Now we joke it is the fear of motorcycles.

She had been sick for a couple of days before daddy had left for his annual trip to WI. Just a low grade fever but very lethargic which is so, so not NG. If memory serves, I took her to the doctor the day before daddy left. Just in an abundance of caution. At that point, nobody really suspected anything unusual. Maybe a cold or flu. No other major symptoms.

I had noticed her eyes were really red. But, oddly enough, I attributed it to the hundreds of hours of TV she had been watching. It was like a solid week of doing nothing but sitting and snoozing in front of the TV. The day after daddy left, I still felt like something wasn't right and we were going into the weekend. It was late on a Friday and my usual doctor was off for the day so we went to another doctor in his practice. He felt that it was some kind of infection. I suppose he probably gave us an antibiotic (or she had already been taking one) either way, he assured us she would be starting to get better by the next day.

Saturday rolled around and there was no change. I called the on call nurse and was sent to a doc in the box. They tested for strep and mono I think. They still couldn't see that there was anything visibly wrong other than the constant low grade fever, red eyes and lethargy. Maybe we got some medicine then. I honestly don't remember. By Monday, I was a wreck. NG had been sick for over a week and nothing seemed to be helping.

I called the doctor's office again and was able to see NG's doctor right away. I had all the kids with me. Pretty sure I hadn't showered in a couple of days. Was in sweatpants and a sweatshirt. Daddy had been gone for 4 days and was expected home the next day. When the doctor finished examining her, he stepped out of the office. I could just tell something was wrong. He came back in and told me I needed to go the pediatric floor at the hospital right away. I was dumbfounded to say the least. I remember Little Mama wanting to sit on my lap at that exact moment and I remember telling her "no" and the doctor giving me a sideways look. I was in shock! I was in survival mode. I was trying to keep my composure.

He went on to explain what was wrong with her, Kawasaki Disease. He explained what it was, that they didn't really know the origin of it. But that she would need to go to the hospital for further evaluation and treatment. Thankfully the hospital was right around the corner. I called Sissy and she met me up there and took the little kids home. Grandma came up as soon as she was through with work and sat with me while NG got her first of many needle pokes.

One of the hardest parts I am sure was for daddy. Here he was 1500 miles away from home to be told over the phone that his daughter had been rushed to the hospital with some strange disease. He tried to get an earlier flight but it couldn't be changed. He sat and waited for the next available flight back home. He came directly to the hospital in unshaven and in hunting clothes and I am sure barely any sleep.

I stayed with NG the entire time she was in the hospital. After the specialist came in and confirmed the diagnosis, treatment had to be decided on. NG has a disease that does not have a specific test that confirms the diagnosis. So, I had to trust what all the medical people were telling me. She had to have an IVIG which I think is somewhat like a blood transfusion. When they gave that to her, which was at night, they had to wake her ever couple of hours to take blood and monitor her vitals. She was stuck so many times I can't even tell you. I just remember towards the morning, she didn't seem to even care.

I stayed with her in her bed the entire time. When she was finally able, we got up and would walk around, dragging the IV along with. It was a day or two before Thanksgiving and we walked down to the craft room and colored hand turkeys. It was a blessing to have the treasure chest to go to. There were games and coloring things and stickers and little toys that she could play with. We didn't have a change of clothes or toothbrushes or anything. (Not that I even cared.)

Kawasaki Disease is a vascular disease that if not caught can cause aneurysms. They have great success in the treatment. Followed up by an asprin regiment, EKgs and ultrasounds. We were done with the aspirin about 3 months after and she only has one more EKG and ultrasound to go.

Oddly enough I don't remember being uncontrollably worried. I just knew everything was going to be OK. I had a peace, thanks to God. He was with me the entire time. I know that because otherwise I would have been a total wreck.

It has been three years and I only think of it occasionally. Like when people talk about the flu and those with health issues. I wonder and usually call the doctor to ask "Does that mean NG?" There have been times when she is sick or her eyes are red and I wonder if it came back (although I have been assured that doesn't happen.) Sometimes I wonder if any of the other kids have it, will get it. Although it is something you are born with.

With the Thanksgiving holiday approaching I cannot help but give thanks for the health of NG and all of my precious children. . .

2 comments:

Diane Moody said...

I remember the call from your mom when this happened. I was in Oklahoma - my mom was in the hospital and we'd just found out about her cancer. Strangely enough, we'd known a family who'd had Kawasaki's - their little girl had napped on a sofa that had been recently professionally cleaned...at least that was the cause they gave. Such a strange illness. I'm just so glad NG recovered and you ALL survived! Lessons along the journey of life...how do people manage without the peace of God in their lives at times like this?

Katie said...

Good Mama, to keep taking her in, your instincts are always so right.
Glad NG recovered. Thankful along with you.....