For Now, We Wait

Thank you for the outpouring of love and support. This week has been incomprehensible. We are just in disbelief of the situation we’re in. Blake is doing extremely well. He’s not on oxygen, not on any lines, only hooked up to monitors. He’s our lively, happy, funny guy. Because he has a cold we are confined to our room, but he’s playing, laughing, quoting movies (yes, he’s two) and is acting like himself. You’d never think it was possible that someone could look this good after his blood stopped pumping less than a week ago.

This week he’s been at Rady’s mostly for observation and figuring out next steps. That part is amazing. His tests, though, are bad. Really scary bad. His numbers are higher than when he went on ECMO/life support last time. Yet even so, he’s somehow able to function incredibly well while being THIS close to heart failure.

Earlier this week, no one knew how to judge when or if to send us home because we can’t explain why there has been a change or what led to this near death event, and certainly couldn’t say with confidence that he is safe. So, as anxiously expected – our medical team has been in touch with Texas Children’s. As early as today, or as late as Monday, Blake will be medically flown to Houston for a proper lung transplant evaluation. We have sadly outgrown the medicinal therapies Rady’s can provide for his condition and need to be in a place with more options for us.

This may sound confusing, but his lungs are actually the problem. His heart is anatomically correct, and obviously very strong, but high pressures in his lungs are causing it to fail. It’s complicated, of course.

As parents though, we continue to have an exceptionally hard time reconciling him looking and acting SO amazing and yet being so sick. Ugh.

So until we know more, we wait… Though this is ridiculously difficult, we believe in getting him to the best resources available, and will continue to make the best decisions with the info we have. Please stay strong for us. We are desperately trying to stay focused on getting through this! Keep your thoughts positive and fill your hearts with lots of love #forblake. ??❤️?

#forevergrateful #teamblake #believe