"Relax," said the night man
"We are programmed to receive
You can check out any time you like
But you can never leave!"
By Cathy Jameson
Many people are experiencing difficult times due to restrictions placed on every-day activities. So far, we’ve been able to handle much of the day-to-day life that comes with such a major change. Ronan’s done fine with staying home also, but if his medical issues become more complicated, who will we be able to turn to? His providers have always said that they want to see him, but that was before lockdowns were put in place. They’re under added stress, and now, so are we.
Trying times for sure…
After giggling, I said to myself, “Whew! We survived another month,” but couldn’t help but think, “I wonder what’s going to happen next.”
Since going into lockdown, most days have been a blur. Certain days will stand out, especially the ones where we see Ronan struggling. Those are the most frustrating for him and for us as well. I want for those frustrating days to end so Ronan can be his happy self again. I can usually solve whatever problem has come up thankfully. When I can’t, though, I know to reach out to one of the many people we have at our fingertips and ask for help.
Unfortunately, like us, those who can help are also dealing with their own set of restrictions.
For two months, we’ve been waiting to hear back from one of the specialty clinics at the hospital. Assuring us that Ronan had already moved up their patient call list because of symptoms he was having, we were told that he’d be seen next. But no call came, no email was sent, and no snail mail had arrived telling us when to bring him in. After calling and pleading one more time with one of the kind nurses who was following Ronan’s case, last Friday, at 4:56pm, I finally got the call we’d been waiting for. I also got a huge apology.
“I can see that a referral was made several weeks ago, but we never got it.”
When the hospital stopped seeing regular patients—and stopped performing procedures that the state classified as elective, all communication ceased. Regular patients and their medical care didn’t rank any more, even though they are as medically fragile as some COVID-19 patients have been. For a child like Ronan to be denied medical attention is absurd. So is limiting his medical teams’ expertise and direct care. We were told that patient-to-doctor phone calls and telemedicine would be options, but before we could consider those, the team said that those options wouldn’t give them the answers they needed. Ronan’s issues were far too great and would require more than what telemedicine could provide.
He needed to be seen in person by his team.
I don’t know if it was that Hail Mary call I made early Friday morning last week that got things moving again or if a few restrictions were starting to be lifted already. Whatever happened, I’m grateful. Not only was Ronan finally seen on the last day of April for the evaluation he needed, but the procedure that could help alleviate some of the problems he’s having was also scheduled. That necessary procedure, which will help determine next steps in treatment, is a few weeks away.
Still, just having a date to put on the calendar is a comfort.
I understand that COVID-19 has been, and could continue to be, a real threat. But too much time has lapsed for too many families. Non-COVID-19 patients need care now. They needed it when the crisis hit America, and will need it after the panic that accompanied the discovery of the virus diminishes. I’m praying that those who’ve been waiting for their individualized medical attention will get it soon – either by the lifting of the quarantine or by fighting for their rights. It’s awful that it sometimes takes a fight. I am glad I have the strength for that because sometimes, fight we must.
Cathy Jameson is a Contributing Editor for Age of Autism.