They’ve told us we are going home this week. Either on a right wing accompanied by EMTs while the IV of heart failure meds infuse through Annie’s picc line. Or by driving cross country buckled snuggly into our own back seat with Annie gulping down her oral regimen every eight hours. How could the two options be so different?
On Saturday afternoon Annie’s heart rate became elevated again, a sign that her heart was working too hard and overcompensating for its poor function. A sign that the oral medicine wasn’t enough. A threat that she still needs the IV medicine she had just weaned from. The nurse practitioner, the fellow, and the resident told us through grim faces that it was time to restart the milrinone. The only person who disagreed was the head doctor on call. She recommended giving Annie a little more of a chance to show us that she just couldn’t make it without the milrinone IV.
Sunday afternoon the head of transplant stopped by and pulled up a chair. We knew the conversation would be long and hard. He had reviewed all of Annie’s heart echoes and said there was one last ditch effort for her heart. Another oral medicine was added to her growing prescription list.
If she shows us she can sustain on this oral combination, she will still likely have her Glenn surgery. However high risk that surgery was before, it will now literally be a life or death situation for Annie because she will undergo it with an already-weak heart. He did say, though, that 2/3 of patients like Annie show improvement in function after recovery. That’s if she can make it off the operating table in August.
As we monitor her through Wednesday, if she cannot maintain stable function on this oral combination, her birth heart is telling us that it needs to be replaced. We will restart the milrinone IV and travel home to be inpatient at Children’s in Little Rock to list for a transplant.
So for today I snuggle Annie tightly as she burrows deep into the safety of my neck. My hawk eyes watch the monitor for the pace of every heart beat. And I cry, desperately begging for pristine performance from the liquid in that syringe. And I cheer on Annie’s heart with veracity that I’ve never cheered before. C’mon, Annie, you are strong enough to do this!
“[This] day is yours, [Lord], and yours also is the night. ” -Psalm 74:16