by We made it back! We absolutely will miss CHOP and the wonderful team out there, but we are definitely happy to be back “home” at the University of Iowa.
The cool news is? One of the docs we had in Philly this time was on loan from the U of I. And he’s soon to be here too. We joke that we raced him back and tried to offer him a flight. 🙂
We really will be forever thankful to our surgeon, Dr Gaynor, and the whole team out there. There just aren’t words to express our gratitude.
AJ and Dr Gaynor, his surgeon who has now done both his Norwood and his Glenn.
And now it’s onward and upward as we challenge the team here at U of I to get us home. 💕
Now for the “negative”. AJ does have a sizeable clot in his heart that we are following and treating as best we can. I don’t think it needs mention, but prayers that it stays parked right where it is and dissolves would be fantastic.
In September he will have a bronch so we can start looking at what needs to be done for his subglottic stenosis. Ultimately he will most likely need a reconstructive surgery to fix that.
Before we can even start thinking about his final heart surgery AJ is tasked with getting off all ventilator support (including cpap), getting off all oxygen, and having reconstruction surgery and ultimately having his trach taken out.
That said? The Glenn that he has now is the most resilient stage he could be at for all of these things, and even if AJ didn’t have the other issues, we wouldn’t talk about his Glenn until we noticed he was starting to need it — tiring easily, turning blue, etc. typically something that happens as the lower half of the body begins to be “larger” than the upper half. So we have time.
I spend a lot of time in awe and shock that this little guy has beat the odds yet again and is still here today. And so pink compared to before!! His oxygen saturations before surgery sat close to 70 due to some narrowing he had. Now his norm is in the 80s. A number that would still make most docs cringe for a heart healthy kiddo, but is absolutely perfect for his composition.
To say we are blessed is an understatement. To say we are thankful to the doctors he’s had along the way is an understatement – especially those who helped us get our second opinion and flights set to go out to CHOP initially, his cath docs, his surgeon, his nurses, RTs, PT, OT, ST, coworkers who donated PTO so I could spend time where it was needed, and everyone else who has pitched in and/or prayed for us… We are so incredibly thankful and blessed to have such an amazing network of folks in our lives. 💕
On the flight back to Iowa, we even got to take one of our regular CICU RTs on the trip.
As for what’s next? The wait for home nursing is unfortunately not a short one in the state of Iowa. It’ll be a while. We will need to get things ready and set up at home. We will need friends and family who are willing to spend time at the hospital to not only get to know this crazy little boy and maybe learn a thing or two about caring for him, but even just hanging out with him and helping to keep His always busy fingers and toes away from his tubes and entertaining him while we try to get things done outside of the hospital walls. This is definitely a marathon and not a sprint, and we will still likely need to lean on many of you for help, support and prayers.
A fleeting moment of him off the vent satting 90, guessing we will soon be changing how much oxygen he needs when he’s off the vent.
