by I’ve been stalling on writing this post, but I need to get it out.
When we went to Philadelphia to discuss AJs airway repair, we came back and ultimately weren’t sure if he would ever be a candidate to have it done. Without the airway repair, plugging his trach could be fatal as he’s not able to breathe around above/around it. Also – cardiology won’t do his next heart surgery unless the repair is done and they can intubate him from above.
Fast forward to now. We obviously haven’t had the procedure yet, but for the past month or so I’ve been working with CHOP, talking to cardiology out there, expressing my concerns about not being able to get him to where ENT wanted him to be. Everyone managed to get together and come to an agreement.
The ENT nurse called me and said that Dr Jacobs has agreed to do his LTR (reconstruction surgery) but wanted to be clear that he had concerns about AJ’s airway not healing well enough due to his lower o2 saturations – meaning he believes he can open his airway up so it’s a little safer, but isn’t convinced it will be well enough to ultimately remove his trach.
I think the nurse talking to me was geared for me to be disappointed, but truthfully that’s all we want — a safer airway. Where when he plugs his trach it isn’t a panicked emergency because he can’t breathe at all (He’s done that twice this week alone – dried snot pictures provided to illustrate, sorry if it grosses you out!). And of course we really would like to make it possible to have his next heart surgery when it’s time.
Plugged trach – it’s harder for him to cough snot up, and it dries out in the trach tube itself since there aren’t any mucous membranes there to keep it from drying.
You can kind of see the tiny pinhole he was breathing through. I can only imagine how hard it is to breathe through that – I’ve tried breathing through a straw and that was hard enough!
So the plans are the following – sometime in the new year (Jan-Mar) we will be heading to Philadelphia again.
Week 1: we will have outpatient appointments with all of AJ’s specialists at CHOP – Cardiology, Hematology, Pulmonology and Gastroenterology.
Week 2: we will have a triple scope with ENT, GI, and Pulmonology to make sure his airway is still safe and there are no barriers to doing the reconstruction. While he is in the OR they will keep him sedated for extra time to make sure he can maintain his saturations. We will likely be inpatient overnight for that procedure, but outpatient again after that.
Week 3: if everyone has given the green light and sedation goes well, AJ will have his reconstruction surgery. They will leave his trach in place and open the airway above it, using cartilage from his rib and place a stent in to hold it open. He will be inpatient afterwards.
Week 4-5: when it’s time they will remove the stent they had placed. How long he will remain inpatient for after that is unknown.
From there, we have to remain outpatient in the Philadelphia area as they monitor his healing and do additional bronchoscopies/microlaryngoscopies. 6 weeks is how long they expect an average kid to need, AJ isn’t average, so we could be looking at double that.
If you’re still with me, that means we are looking at 10-17 weeks in Philadelphia, most of which is outpatient with AJ. We don’t know yet exactly where, or how this is going to work. Obviously I’ll need to work, and am lucky enough that we have an office in the Philadelphia area. But we unfortunately can’t take our nurses with us, and our private insurance nursing coverage will likely already be maxed out and Medicaid won’t pay for out of state nursing. So we have to figure out how to balance all of that.
Needless to say there is a lot to iron out logistically and financially, not to mention emotionally. Handing over your “healthy” and aware little boy for surgery definitely feels a lot different than handing over your very sick baby who is struggling to stay alive.
If you could keep us in your thoughts and prayers as we navigate and prepare for all of this, we would definitely appreciate it. As we know more we will be sure to update with more information.
Definitely thankful today for family and friends, our nurses, for the doctors in both Iowa City and Philadelphia for working together to make this possible for AJ, and much more. 💕
For those interested, you can find more info about the reconstruction surgery itself here:
