Her son, Spencer, who is 5 was admitted to the ICU at Primary Children's in SLC in heart failure. He had a stomachache that wouldn't go away and it turned out his pain was due to his enlarged liver caused by the heart failure. Within 48 hrs of arriving at the hospital, he was being prepped for life support and emergently listed for a heart transplant.
Even with my cardiology background, I am stunned. Things just don't normally progress this quickly. But, I took care of lots of kids with cardiomyopathy and I've seen lots of miracles, so that is all I can focus on for now. Tomorrow, he will come off full life support (called ECMO) and put on a VAD, which is essentially and artificial heart, but it's connected outside the body. It is used as a bridge to transplant. Again, I've seen lots of kids get a VAD, get a transplant and then go home healthy! I even took care of a teenager who wheeled her VAD around (it's about the size of a suitcase on wheels) and even into the teen lounge at the hospital to hang out.
When my kids ask how to pray for a transplant, I have simply told them to pray that if someone finds themselves in the situation of having to make the decision to donate life, that they will have the strength and courage to do so. Every single day has been a roller-coaster for Matt and Nancy and the plans seem to keep changing by the hour. We just found out that Spencer's medical team consulted one of the cardiac surgeons in Denver today as they were making new plans--just so happened to be the same doctor who has operated on Cooper three times. The world of pediatric cardiology is indeed very small.
I would love to organize a blood drive or some other significant event for Spencer in the near future, but for now, we just pray and fast and wait.
This last weekend, my mom and I ran with Team Cardiac Kids in the Denver Rock & Roll 1/2 marathon. We all had shirts dedicated to kids with congenital heart disease/defects and we pinned a photo of Spencer on our shirts. I literally thought of Spencer for all 13.1 miles. We love you, buddy! Keep on fighting!!!!
Team Cardiac Kids before the race
Cold, but ready to run
Spencer on the backs of our shirts
About 0.2 miles before the finish line
Glad to be almost done!
3 comments:
So sorry to hear this!! Amazing that you were able to run in his behalf. Scary time- that rocks the world of so many. Lean on Heavenly Father! I'll be thinking about you and your extended family.
Wow, that is so crazy! He and his family are in my prayers.
Such a nice post, Haley. Thank you. We're so lucky to have you and Doug. Love you all!
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