I have wondered many times since Matthew's birth if our journey may end up mirroring their journey. I remember reading a medical journal article given to us by a nurse when hearing of Matthew's duplication, about a child with a 4q duplication, who died at age 1. And reading the 'mortality rate' of kids with intestinal malrotation is anywhere from 2-24% even after surgical correction, depending on the study and other genetic malformations (like heart defects). And seeing a machine breathing for Matthew, when his heart rate was down to 30. And hearing the anesthesiologist tell me that they pumped blood and fluid into Matthew as fast as they could to keep him going. I can't count how many times I have held sweet Matthew and prayed "Please, God, don't let today be the last day."
After that dramatic first 18 months, Matthew got better and stronger. He didn't spend any time in the hospital, we saw fewer specialists, and less and less of his pediatrician. I was lulled into a sense of security. But, just a few weeks ago, as Matthew laid motionless in his bed at Texas Childrens, with bad labs and a very low heart rate, I worried again that we might lose our sweet Matthew. I prayed that familiar prayer every day, and it was so beautifully answered. I am so unbelievably thankful Matthew fully recovered but it was a reminder that the risk is real (as it is with everyone at anytime) and pronounced (given Matthew's history).
This most recent health scare was because of internal scar tissue that formed from Matthew's original intestinal malrotation surgery. The surgeon opened him up and removed as much scar tissue as they could, but opening him up to remove the scar tissue, ironically, causes more scar tissue to form. There is a very real chance this latest surgery and hospital stay will not be his last. I will worry about it every time Matthew throws up, even if only for a little stomach bug like he battled last week. The 2-24% figure that haunted my thoughts as I held Matthew's hand through the scary nights will continue to be in the back of my mind.
The gift of that fear is that it reminds me that I need to thank God every day for giving us another day!
|Matthew (aka skinny mini) showing off his wicked scar.|