Thursday, August 9, 2012

change of plans

When we first talked with our cardiologist and surgeon about Mark's heart, they told us his surgery would be a side entry between his ribs. We were relieved to not hear "open heart".

Last week, a team of 20-30 cardiologists and surgeons met and talked about Mark's unique anatomy and the best route for surgery. Ultimately, they decided open heart is the safest option for him. With a side entry, because of the unique anatomy, the two arteries that lead to his brain would have to be clamped, risking loss of blood flow and long term effects. So, we were comfortable with open heart and the bypass machine after that.

All week we have been gearing up to send our baby into open heart surgery.

Tuesday, I noticed that Mark's eczema looked really bad on his chest and stomach. I noticed small circular patches and thought...ringworm? Seems far fetched, but looks just like it. Then I found a picture online of a type of eczema that resembles ringworm and thought that more likely. I took him into the pediatrician just in case. She deemed it eczema.

We spent 7 hours Wednesday at Children's and I even mentioned the ringworm scare to the nurse practitioner and had her see if his chest looked good enough to operate on. Then, Dr. Guleserian peeked at it. The surgery was on and we were relieved to get it over with as planned.

This morning we arrived at Children's at 6am feeling scared and nervous but trusting that this is all part of God's plan for Mark and for us.

Around 7:45, we kissed him goodbye and watched them carry our sweet sleeping baby off to surgery.

I have to say, it was heartbreaking. I've never been more scared or nervous.

About an hour or so into things, David got a call from Dr. Guleserian saying that she just didn't feel right about his chest so she had called in dermatology (for the first time ever) to look at it. They did a scrape and a culture. It was fungal. Ringworm.

I was mad. Really mad. More mad than I have ever been. I knew it was ringworm and couldn't get anyone to diagnose that. They just put my baby under anesthesia! For no reason! I cried.

After talking with Dr. Guleserian, I felt better. She said there was a high chance that operating on Mark with a fungus would be fatal. Praise God that she had a bad feeling and called in dermatology at the last minute.

I am still frustrated and uneasy about no one catching it up until then but the most important thing is that it was caught. Mark is home safe with us, sleeping in his crib (on his tummy! since he just learned to roll over), in his snuggly jammies. Yes, we still have to go back and do this all over again once we get him cleared up, but then that's it (maybe forever). We are the lucky ones. Mark's condition isn't terminal. Praise God!

1 comment:

  1. Liz. I can't even imagine. You are so brave, and God is doing wonderful things through you that you probably don't even know about. We're praying!!