by AJ went down to the OR around 9 AM this morning. We had a chat with his surgeon, Dr Gaynor, who always puts my mind at ease. I cried on the way up there, but not on the way back down.
First line of business was to remove his trach and put in a breathing tube via his mouth.
True to AJs norm – he didn’t make that easy. We had to have ENT come down and do a bronch to see what they were doing. Ultimately they were able to get the tube through, but not without some effort. AJ officially has grade 3 sub glottic stenosis — basically he has a lot of scar tissue in his throat above his trach that will have to be grafted open via another surgery when he gets older. So for those wondering, AJ will have a trach for a while, at least until he has surgery to correct that.
h to see what they were doing. Ultimately they were able to get the tube through, but not without some effort. AJ officially has grade 3 sub glottic stenosis — basically he has a lot of scar tissue in his throat above his trach that will have to be grafted open via another surgery when he gets older. So for those wondering, AJ will have a trach for a while, at least until he has surgery to correct that.
Our surgeons preference is to leave the breathing tube in for a day or two to prevent infections from the trach “breathing” on to his incision, but ENT says he has to have his trach back in before he leaves the OR today. So we will have to carefully manage that to keep it off of his incision.
Anyway, around 1130 am they had his breathing tube in and were beginning to work on an arterial line and access.
Help-A-Heart sent us lunch which really helped with filling the time and made sure we are actually eating.
Philadelphia Ronald McDonald House also has called to let us know that we have a room. We’ve been staying at a HOSTS for HOSPITALS host house in the interim.
We’ve been keeping busy and laughing and chatting with the other families in the family room. It’s definitely a blessing to have this place to converse with other people going through similar scenarios to help pass the time. We may all still spend a lot of time talking about our babies and medical procedures. We may all be high strung and stressed out, but the support from your peers is a definite blessing for passing time.
The prayers and well wishes from home and across the globe – friends, family, friends and family of friends and family, even complete strangers have reached out and let us know they’re praying for him, and it means so much. This is one incredibly loved little boy with what feels like the whole world praying for and looking out for him.
We were warned of “Glenn head” which is essentially headaches due to rerouting of the blood flow. And also warned that he might have a “Charlie brown” head until his circulation and body adjusted to the rerouting.
Our nurse just updated us that they are currently working on his repair and that so far all is okay. AJ could use continued prayers going into the afternoon that everything goes smoothly and that his intubation experience is the only surprise we have along the way.
