by I haven’t written an update in a little while because things have been very up in the air. I realized today, that just because they’re up in the air doesn’t mean we shouldn’t share our journey and garner all the support and prayers we could use.
AJ had his cath a while ago, his numbers weren’t as good as we were hoping, his pulmonary hypertension hadn’t improved as much as we had wanted (he went from 18 to 16 and we wanted 15 – and preferably less than that), but we sent the data off to CHOP to see what they would come back with.
In the week or so of wait time AJ pulled his trach out and needed compressions again. He had only been left “alone” for a few minutes, so it’s just a reminder of how quickly things can change with him. This time it took a lot more work for him to recover – nitric, increased vent support, and sedatives for the last few days. He’s coming back to himself and has finally started taking feeds again. This morning he’s full of smiles and so much energy that it reminds me of why I felt sick the entire pregnancy.
Meanwhile, we had a care conference with the team here on Thursday. With his numbers, we likely aren’t a candidate for his next surgery. Initially we understood that to mean that we were completely being shut down for the next procedure that he needs, but ultimately after discussing it a second time we were able to determine that CHOP is still reviewing and may end up wanting us back out there even just to review before making a final decision. Our team out at CHOP are discussing the possibility of additional procedures or medications that could be tried, including adding an additional open heart surgery to enlarge the shunt that was placed in his last surgery. That would hopefully buy us some time to improve his pulmonary hypertension. If we can improve those numbers we can hopefully get to a point where we can do the next surgery. We did also request to involve a Dr. out at CHOP that specializes in PH as well to review AJ’s case, trying to make sure all of our bases are covered.
So that leaves us with our newly expanded group of docs out at CHOP reviewing for their recommendation, while the team here in Iowa has provided us with another possible lower risk surgical route to take that’s less risky, but with likely a shorter life span than ultimately getting the full 3 stage procedure (potentially 4 stage now for AJ) that is the typical path for kids with his heart condition — which he may not be eligible for anyway. That leaves us with a lot to think about.
Anyway, it’s been a rough week or so, between all of the backward sliding and hard to digest news. AJ is still under contact precautions, which means gloves and gown everytime you go to his bedside, which makes things a little impersonal when all you want to do is snuggle your baby. He hadn’t been that sedated since his surgical procedures out at CHOP. He’s struggled to come back to eating normally, but we’re making progress. But despite all of that, he’s bounced back quickly to his normal self and has really picked up on his smiling. He’s definitely a friendly happy boy. Most of the time — as long as nobody steals his ball or tries to take all of his tubes and wires out of his hands anyway.
That said… we could definitely use prayers and good thoughts, not only for AJ and ourselves, but for the teams of doctors who care for him on a daily basis and are working to decide what the best next step is to take for him and his growing heart.
