04/22/2026
Update on Conner 💙
As of April 14th Conner is no longer on the transplant list!! What a MIRACLE. This however does mean that all the time spent in the hospital will no longer count towards time on the list if anything were to occur in the future. Conner’s heart is “normal functioning” his labs look amazing and over all we are so happy with his recovery. They have adjusted a couple medications. He will follow up in 3 months. As of right now, Conner will continue on these medications for the next year.
I get some questions regarding what things look like now that Conner is recovered from being in heart failure. Because Conner does have the TTN mutation his heart could change at any time and go back down hill (we pray things continue as they are) Our goal for Conner is to go as long as he possibly can without this happening or having to go through transplant if at all have it be a couple years from now.
Today Conner saw the Cardiac developmental clinic. Specifically meeting with Dr. Castillo gave us hope for Conner’s near future. Now that Conner’s heart condition is in a positive spot we are now going to be focusing on Conner’s autism diagnosis. Conner has been referred to the psychologist at Children’s and will follow up with Dr. Castillo not just with the cardiac clinic but at his own office as well. It’s amazing what a Dr. that sits there and listens to every single concern you have for your child can do!
