When we look at her inside, it’s not a severe case. But she behaves as if it’s a severe case. The teams all met and with that severity in mind, unanimously decided surgical intervention was needed as soon as possible.

Anterior aortapexy with thymectomy – take away thymas gland, take stitches (four) onto the vessel and pull it forward and onto the sternum (breast bone) which lifts it off the trachea and moves the trachea forward. Scar, chest tube, breathing tube would come out shortly thereafter. They’ll do a flexible scope before they do it and while they do it to see if the airway improves. It’s unusual to do this at four weeks. She’s pretty young to even do this surgery, but she’s had enough severe spells that it’s necessary. 3 hr. procedure. 

Another option was to move the vessel so it no longer crosses. Been done about 20 times at Primary, but with bigger kids. None were as young or little as Navy. This requires bypass. “If it was my daughter, I wouldn’t do that as my first option.”

Nothing requires heart surgery and nothing structurally wrong with heart. It’s not a typical road map, but there’s nothing wrong with it. 

WE HAVE A SURGERY PLAN.

We were able to meet with Dr. Barnhart this morning, while simultaneously hosting a Care Conference with our primary team, to determine a plan of action for Navy. 

It was funny because Dr. B started by saying that when we look at her inside, it’s not a severe case. But she behaves (like it’s her choice) as if it’s a severe case. The teams all met early this morning, and with that severity in mind, unanimously decided surgical intervention was needed as soon as possible.

Name of surgery: Anterior aortapexy with thymectomy. 

When, length: Monday afternoon; three hours.

What it’ll do: first, they’ll take away the thymas gland to create more space. Then, they’ll put stitches (four) onto the vessel (that’s right next to the trach and had been a problem) and pull it forward and onto the sternum (breast bone). This lifts the vessel off the trachea and also moves the trachea forward.

Recovery: hopefully rather straight forward. She’ll have a chest tube for a day or two, she’ll have her breathing tube in for a few extra days, and then she’ll have a little scar on her chest from the incision. 

Side Note 1: They’ll do a flexible scope before they do it and while they do it to see if the airway improves and expands with all the extra space they are creating. 

Side Note 2: It’s unusual to do this at four weeks. She’s pretty young to even do this surgery, but she’s had enough severe spells that it’s necessary. She is one of the littlest they’ve ever done this surgery on. 

Ruled out:  Another option was to move the vessel so it no longer crosses the airway. It’s been done about 20 times total at Primary Children’s, but always with bigger kids. None were as young or little as Navy. This surgery also requires bypass. Quote, “If it was my daughter, I wouldn’t do that as my first option.”

We are grateful to have a plan and a scheduled date. We are nervous that she still is so little, but we have a lot of confidence in Dr. B, who specializes in the trachea and surgeries of this nature. We also hope, but feel relieved, that this can end the breathing episodes and blue codes.