Update: 4:00p As of our last OR update almost two hours ago. Things are looking grim as they were unable to switch Carter off of ECMO onto the VAD. Which means he won’t be able to be listed for transplant as this institution will not transplant from ECMO due to the extremely low success rate.
Carter went back into the OR this morning as planned. He’s going to have a Heart machine attached to replace ECMO. I think I posted that last night but there’s a nice reminder.
We met with the transplant team social workers this morning and completed our psych. evaluations. Needless to say it wasn’t much different if not WAY easier than the psych. evaluation needed for adoption. They look at our weaknesses and instead of just listing them as weaknesses we’ll meet with them in the future to improve and strengthen them. We’ve been guaranteed that we won’t be walking this journey alone and that the transplant team will always be there for us. Reason? We don’t know anyone who’s had and has been through a transplant. So we are alone at the moment. It was a really positive meeting as compared to all the scary details we were dealt yesterday.
Immediately ending the meeting with the social workers we went into a meeting with the Pharmacist we’ll be working with for the rest of Carter’s life. That was a positive forward meeting for us as well. Should Carter be approved for a transplant and we decide (remember this is our decision and no one can pressure us either way) to go forward with the transplant he will be on anti-rejection medications for the rest of his life. When he goes to the doctor for a cold we will have to have his doctor and/or us call the transplant pharmacist to confirm that he can have the drug prescribed and it won’t interact with any of his other medications. His medications will also be simpler, he’ll go from three times a day to two times a day and less medications than he’s on now! No more Lovenox or Lasix (eventually).
After explaining all the medications and enforced they are all time sensitive medications, she ended our meeting with this statement. You know the second Carter’s transplant is complete he’ll no longer be considered a heart sick or heart diseased child. He’ll be heart healthy so when someone asks him what’s wrong with his heart because of his scars? He can choose to honestly say nothing (or he can explain it). I was blown away. I thought for sure we were looking at a sick sheltered child for the rest of our lives. Nope. He’ll be able to play football, march in the band, swim, play tennis, play dodge ball, ride rollercoasters- anything that says “if you have a heart condition” will no longer apply to him.
To wrap things up for now, we were asked at the end of our psych. evaluation this hard hard question, What are your concerns about the transplant.
We literally only had two: I immediately chimed in and said we want him to come out successful and live a long and healthy life.
The room went dead silent. I looked at Rob and I knew what Rob was trying and going to say but he couldn’t and when he finally gathered himself up to do so there wasn’t a dry eye in the room.
My loving husband will always put the others first. Through choked up tears he said “You know we’re essentially praying for another family to…” the social worker interrupted and said “Yes we know, this is a gift and take it at that a gift. Be thankful.”
We’ve been there. Three times in the last eight years. We’ve been forced to say goodbye to our three babies. We are grieving with this family because we know word for word, thought for thought, tear through tear what they’re currently facing and the choices they’re having to make. My heart is so very heavy yet at the same time I can’t even begin to express the gratitude and love I have for this family. If you’re out there and you come across this page please know we will forever daily thank you and pray for you and your baby. We will talk about your baby and you with the upmost respect and love. We will nurse, tend, and grow this heart in honor of your baby and your family. No second or experience will ever be taken for granted as we know if it weren’t for your child, we would not be where we are today.
So here are my hugs and thank yous in advance and from afar for your extraordinary gift.
Rob, Liz, Lydia, Jackson, Carter, and our extended families.