by Every year AJ has a heart catheterization. It’s part of the single ventricle clinic path to monitor his progress. In layman’s terms a heart cath is when they enter your circulatory system from either your groin or neck (or both, in AJ’s case) and enter the heart to get incredibly detailed images and measurements to see how he’s doing.
In AJ’s case, he has a leaky valve that we have to continue to monitor, and we also have to continue to keep an eye on his heart function in general. This year we are hoping to get an update to see how well his heart/lung pressures are doing since we’ve taken him off of one of his pulmonary hypertension medications. After seeing how his progress looks, we will be chatting with our cardiologist about our next steps – either putting him back on medications if it hasn’t improved, or weaning him off one of his other medications or oxygen.
AJ’s annual heart caths are typically in January. We do this because it helps kick start our deductible for the year on insurance. He *is* on medicaid, and that does pick up the slack when we’re in Iowa, but medicaid has refused to pay for his treatment in Philadelphia, so we have to leave it to our private insurances. Yes, insurances. AJ is triple insured… Because, AJ.
His cath was scheduled for yesterday. We had everything lined up. Aaron switched his work schedule around to make sure he could be there, and we had backup care to hang out at the hospital for the short periods of time that neither of us would be able to be there Wednesday evening. It takes a lot to accommodate him going inpatient, and although we *can* do it at the drop of a hat when it’s an emergency, it’s definitely preferred to actually be prepared for it. So we shift projects and responsibilities at work, let our nursing agency and nurses know to take the time off, and make arrangements so that we know that both kids are covered with another adult with them at all times.
And then his cath was cancelled.
The PICU was full, and if they do any interventions, there is a good chance it’s where AJ would need to go. So we were rescheduled for March, and are waiting for feedback from CHOP on when we will be going back out there — they said sometime in the spring, so I’m hoping and praying that it’s AFTER his heart cath here in Iowa.
I’m grateful for the foresight to cancel the appointment and not just go ahead and panic about the space afterwards. Truly. And this time I was kind of happy to have the delay. I had things that I needed to work on. Plus, given the fact that I swear at least 50% of the local heart kids I know have been in the ER for RSV or other viruses lately, it’s not exactly the place I want to be hanging out. (side note – sending lots of love and prayers to those of ya’ll who are there!!)
So AJ and I hung out. We did some laundry, which is his favorite thing to do. I worked on a speech proposal for an upcoming conference and ultimately landed my first client for my new venture. Amy came over after work and picked up some respite hours and helped get him to bed and fed so that I didn’t lose my mind. Tomorrow I’m thankfully able to go back to the work, but I’m really glad I was able to take that break, even if it wasn’t planned. I can’t remember the last time that I’ve had a day off where AJ wasn’t sick and I wasn’t dashing around from appointment to appointment with AJ. I’m not going to be as thankful if we end up going out to Philadelphia before his heart cath happens, but we’ll cross that bridge if it happens!
