A New Heart for Caleb
Donation protected
Yesterday was a very tough day for our family. At around 5:30 pm, we finally heard from Kim the transplant coordinator after the Medical Review Board had finished discussing whether Caleb would be a good candidate for transplant. She and one of the cardiologists, Dr. Jeewa, came into Caleb's room and told us that they had approved Caleb for transplant. However, the odds of Caleb receiving a donor heart that is a good match for him are slim to none. To put it as simply as possible, he has extremely high levels of antibodies and he would react with and reject nearly every single donor heart. We were shocked... and after we realized what this means, we were completely heartbroken. Doctors told us that transplant was Caleb's best shot, and now we're hearing that option is almost completely off the table. Many tears were shed last night. To say we're disappointed doesn't quite cut it. We're devastated. We are still processing this and in many ways grieving over the life we imagined Caleb could have with a healthy new heart.
Today I woke with a surprising amount of calm and clarity. I was surprised by it, but grateful for it after feeling so battered by the previous night's emotions. Daniel and I have decided that we just need to keep pushing forward and fighting to do everything we can for Caleb. We have begun looking into certain treatments that are done to lower antibodies; it's not very promising, but we're going to look into whether it's an option for our son. Meanwhile, we met with Dr. Fraser, the Chief of Surgery, this afternoon to discuss the plan for Caleb's next surgery. The plan is to wait and watch... we wait for Caleb to get bigger and older so he's a better candidate for the Glenn procedure, while monitoring him very closely in the CVICU setting.
So that's the latest. I wish it was a better update. The good news is that we got a few awesome smiles from our little champ today, which we hadn't seen in a couple days. His smiles seriously make my whole day!
Please pray for Caleb to stay stable long enough and grow big enough to have the Glenn. This is our new objective. Thank you all so much for your continued love and support.
xoxoxo Daria & Daniel Zadik
Today I woke with a surprising amount of calm and clarity. I was surprised by it, but grateful for it after feeling so battered by the previous night's emotions. Daniel and I have decided that we just need to keep pushing forward and fighting to do everything we can for Caleb. We have begun looking into certain treatments that are done to lower antibodies; it's not very promising, but we're going to look into whether it's an option for our son. Meanwhile, we met with Dr. Fraser, the Chief of Surgery, this afternoon to discuss the plan for Caleb's next surgery. The plan is to wait and watch... we wait for Caleb to get bigger and older so he's a better candidate for the Glenn procedure, while monitoring him very closely in the CVICU setting.
So that's the latest. I wish it was a better update. The good news is that we got a few awesome smiles from our little champ today, which we hadn't seen in a couple days. His smiles seriously make my whole day!
Please pray for Caleb to stay stable long enough and grow big enough to have the Glenn. This is our new objective. Thank you all so much for your continued love and support.
xoxoxo Daria & Daniel Zadik
Organizer
Jessica Canino
Organizer
Austin, TX
