We knew that despite being able to bring Jack home so quickly, we would have to go back to Children's and that he'd have to have his first surgery.. I guess, for me, I was enjoying the vacation so much I just don't want it to end. I'm dreading having to return to the reality of Jack's situation.
Jack had his EKG and an echo at Children's on Friday. We met with our beloved Dr. Ronai shortly after. Typically when she walks in the room, I can breathe a little easier. Her demeanor is usually relaxed and in turn, relaxes me. As soon as she sat across from Jack and I, I could feel the shift. She would say something positive, probably about how his color looks good. She would pause, purse her lips as if carefully trying to choose what words came out next. She would stare at Jack and give us another positive note.. such as how pleased she is with his weight gain. Then another pause. Deep stare at Jack. I know what's coming and my rational, level headed side wants to be able to absorb what Dr. Ronai is going to say next. I take the immediate urge to cry, the gut wrenching anger and apprehension and push them as far down as I can.. and I listen.
With every doctor visit, Jack's oxygen saturation levels drop a little. When he cries, his lips are starting to turn a little blue. The original hope was to hold off on Jack's first surgery until he was 4 or 5 months old. Given his dropping o2 sats, this will no longer be the case and it is looking more like he will be 3 months old. We booked a cardiology appointment in 2 weeks, however, the plan is to get him in for a cath lab before that and to be able to cancel the original appointment. During the cath lab, he will be hooked up to catheters that will run a bunch of tests. This is a 24 hour test so he will have to spend the night. Once they get those numbers back, the cardiology team will be able to decide when he will need the first surgery. He will have to be put on a bypass machine for 90 minutes of his surgery.. which to me, is the scariest part of it all. Dr. Ronai was very reassuring and positive and said she has complete faith that he will do just fine on it. The greatest risk being on the bypass is stroke, but she said his brain is much more developed now, he's big and strong and she thinks he will do just fine... and she said she will be there with us, and for us. And we love her and trust her.
The actual surgery is called the Glenn. Boston Children's hospital has a 98% success rate with this surgery. I like that number. They typically do this surgery at 3 to 8 months, when the lungs have "matured enough so that blood flows through more easily, and ventricular force is no longer necessary." The Glenn is a "direct connection between the superior vena cava and the pulmonary artery, diverting half of the blue blood directly to the lungs without help of the ventricle."*
Basically, this first surgery is rewiring his heart so that his blood flow goes where it should and that red blood cells get to where they need to be.
Please keep us and Jack in your thoughts and prayers. I will continue to update the blog and let you all know when we have booked the cath lab.
xo Marissa
He was such a good boy during his echo
Waiting for Dr. Ronai
<3
*This is actually typically a 3 phase procedure.. The Fontan Sequence. There are 3 different surgeries. the Norwood Procedure (which Jack got to skip because he is such a champ) The Glenn, then the Fontan. They are outlined here if you're interested in reading up on it... http://www.childrenshospital.org/conditions-and-treatments/conditions/h/hypoplastic-left-heart-syndrome-hlhs/treatments
http://www.childrenshospital.org/centers-and-services/department-of-cardiac-surgery
