I appreciate the recent precautions that have been put in place. As much as I want to venture out, I’m staying put. Thankfully, I’m still able to conduct much of what I need and want to do from home via phone calls and emails. Zoom meetings have been a great addition to my life as I’ve enjoyed “seeing” other people even if just on the computer screen. While my family has settled in with the changes, I realized that I can’t do everything from home. Ronan’s medical needs are far too great.
Right before the quarantine, I’d taken Ronan to another of his follow-up appointments. It was for problems that brought us to the E.R. back in December. While there, his providers and I discussed the next steps. That included adding a new specialist and making more follow-up appointments with existing specialists. Before we ended week 1 of this lockdown, all of his appointments were cancelled. Only essential employees would be working, and only emergent medical cases would be considered.
I made a call to one of the nurses first thing on Monday morning and shared some new concerns we had seen over the weekend. It wasn’t an easy phone call to make. I had read of the restrictions. I also knew that other families are dealing with far worse and need more immediate attention and we may experience major delays. Ronan needs help, though, and some of it cannot be done from home or via telemedicine. Not wanting to take too much of her precious time, the nurse assured me I’d done the right thing. She also shared that what we’re dealing with would take top priority. I asked her what that meant. Clinics have closed, patients have been turned away, and appointments were being rescheduled for 6 - 9 months out. I was grateful that top priority meant that Ronan moved up the list. I was sad to learn that another kid would be moved down.
How does one decide which patient is more critical than another? Who makes that decision? And what happens with the kid who moved from the top spot to somewhere in the middle? Is their family still able to reach out to the ones they trust and depend on? Or do they have to wait until things go back to normal again?
For some medical issues, Ronan requires hands-on care and procedures that will have him go under anesthesia. We know that complications from the procedure could arise. Having gone that route before, we understand the risk. Before even considering doing that, we’ve asked for our team to teach us how to do things differently and even better than we are. We’d love it, and I know they would, too, if we could forego a trip to hospital. But we can’t. And the team is calling us in. Complications from the condition supersede the shelter-in-place requests.
Collaboration of the latest findings from medical team members brought up valid concerns – they cannot treat Ronan from a distance. They do not want to wait too much longer to see him though. Unfortunately, we will wait. Hospital staff are dealing with constraints because of COVID-19. Essential staff are doing everything they can to treat affected patients. Ronan tops the list, but it isn’t the safest time to bring him in. Our appointment, which would usually be scheduled within a week, isn’t until April, “…and that’s at the earliest. Don’t be surprised if it’s moved to May before we can see him.”
I had already likened the coronavirus quarantine to a Twilight Zone episode. After hanging up with the nurse, I felt like I was the main character in the show. An eerie feeling crept in. So did a little bit of worry.
Parenting challenges exist in every-day life. Special needs parenting requires juggling, ingenuity and a lot of balance. To keep everyone happy, healthy, and where they need to be, I sometimes have to be creative. I also need to be patient. I will need all of that and more as I wait for the nurse to call me with more information.
Best practices for those treating people with COVID-19 are being created as the professionals encounter them. They’re being revised just as quickly as they’re being made in some places. Medically fragile children can usually be seen, but in times like these, safe practices will trump their care. I knew that Ronan’s care would be delayed. I’m not angered by our situation, but am remaining hopeful that his turn will come. I know it will. Until then, we’re being smart about the care he’s been prescribed, and we’re communicating with his medical team about any changes his health. None of us want to risk Ronan’s health. He’s an essential part of our family, even with as many complications as some of his conditions bring.
Cathy Jameson is a Contributing Editor for Age of Autism.