Saturday, January 10, 2009

Kawasaki...

In light of the death of Jett Travolta and the recent news reports of the son of one of the members of the Backstreet Boys, I thought I would lightly touch on the subject of Kawasaki Disease. I admit I do not know very much about it, at all, but it is something that has touched my life.

During the winter of 2004 we were still living in Pennsylvania. Where, exactly, is a hotbed of illness, but also a good place for medical practice. Not too far away are scores of medical centers that are teaching hospitals alongside highly respected hospitals and clinics with fantastic doctors who have seen and/or treated a lot of weird things. That turned out to be a very good thing for friends of ours. Mark and DeNeaugh have two beautiful daughters, at that time they were 5 and 2. Mark worked with Jeff, and Deneaugh stayed home.

Brianna is the oldest. She had started talking about he chest hurting and her tummy not feeling well. She started throwing up. A lot. She started running a pretty high fever and became somewhat lethargic. She also had a strange rash all over her body. All over. Her parents were obviously alarmed and started turning to the doctors for help. For a bit, luckily a very short bit, nobody really knew what was wrong. There was talk of roseola, but Bri also wasn't following the typical for that (high fever for up to a week, then a rash breaking out), so nobody really believed that was what was wrong. Bri was only getting sicker.

There was a pediatrician in Pittsburgh who immediately recognized Bri's symptoms and started treating her for Kawasaki Disease. For a while, we all believed that Mark and DeNeaugh could finally breathe a sigh of relief. Granted, none of us had a clue what KD was, but we figured if she was being treated, she'd be fine. Boy, were we wrong!

About a week after treatment began, Bri started going downhill again...and fast. She ended up in Ruby Memorial Hospital in Morgantown, WV. She was trying to go into heart failure from the KD, and she was in very bad shape. DeNeaugh and Savannah ("Sissy") were with Bri pretty much all day everyday, Mark would stay with her at night after he got off work at the plant. Something that actually was good to know the hospital allowed, and certainly helped this beautiful little girl. She had a pic line placed that allowed antibiotics and other medication be administered directly to her heart. She had a special diet. She had a ton of other directives. None were easy, but all were bragging rights for her. She was amazing in sharing about her ordeal!

She did make it home in due time, pic line still in place and medications being administered for hours each day at various times. Sissy was great, too, as she took it all in stride and knew how lucky she was to still have her big sister. I think it probably aged mom & dad a bit, but I also think we can all understand that.

This family now lives in their homestate of Texas, and they are doing well. Bri is an active softball player and apparently very healthy. She was lucky. Many children out there who ar diagnosed with this disease are not. If not caught very quickly (as in the case of Brianna) by a doctor who either has dealt with it, or paid attention during the rare disease portion of medical school, the child will suffer horrible heart problems for life...at the very least. At the very worst, the child will die...in pain. It's an ugly and ferocious disease.
It was because of this family that I not only learned of this disease and its devastating effects, but of the way it touched the Travolta family. And others. It certainly is something that needs to be highlited more.....

3 comments:

Corbie said...

I was watching the Travolta family tragedy closely as I am one of those 'weirdos' like Kelly Preston who believes a lot of these diseases are caused (or at the very least, heavily influenced) by environmental toxins. Such a sad story for the Travoltas but a wonderful outcome for your friends.

Denise said...

I, too, believe that, Corbie. Especially after living in Fayette....

Jenn said...

Thanks for sharing your knowledge. I so glad for the outcome your friends got. I feel saddness for the Travolta family. No parent should have to plan their own childs funeral.