On my birthday and at Christmas, the kids ask me what gifts I want. Every year on my birthday and at Christmas, I say that I want a nap and for someone to make me lunch so that I don’t have to make it myself. The kids laugh, “MOM! No, really. What do you want?” Truly, I’d love a nap, but I tell them that whatever they want to give me (hint hint, dark chocolate) would be wonderful.
Last week, specifically on Friday at 4:27pm when the doctor’s office was about to close for the weekend, I wished for something else—I wished that Ronan’s seizure medications would be filled correctly and on time. The kids wished for that with me as well. In fact, they had prayed for that special intention the night before when I shared that we were facing a potential problem filling one of the prescriptions.
Thursday morning, I’d called 12 local pharmacies asking for their help because the specialty pharmacy we have been using (and love) shared that they couldn’t help us this month. The manufacturer of the medicine is out of stock.
“Call around. See if any has the drug on hand, on their shelves right now. We can transfer the script to them right away if they do.”
One by one, each of those 12 pharmacies said, “Sorry, no. We don’t have it.” Each one shared the same message we’d already gotten – the manufacturer is out of stock, and no expected date of availability or delivery has been given.
Later that evening, right before family prayer time, Izzy asked quietly, “Mom, if the company doesn’t give us the prescription, can this cause something worse for him…like death?”
I wasn’t surprised that her mind went there. Mine had, too.
“Oh, sweet girl,” I started, “We’ll hope that it doesn’t come to that.”
I’d already cried about the situation, but my heart ached again after hearing my daughter’s question. Ronan’s siblings know that missing meds can cause issues. A few times over the years, their brother has missed a dose. That’s usually because I think my husband gave it to Ronan, and he thinks I’ve given it. That hasn’t happened in a long time thankfully, but with the manufacturer out of stock, it wouldn’t be one or two missed doses. It could be days, if not weeks, of missed doses. Not wanting to face that, I was back on the phone Friday morning and into the evening also. By nightfall, I’d called 15 pharmacies, communicated with the nurses at our doctor’s office multiple times, talked to our insurance company about new issues that had cropped up and even left a message at a Senator’s office asking for assistance.
So far, no one has been able to help us with the situation.
Then, the already terrible situation got worse.
Right before close of business on Friday, I discovered that it wasn’t just one prescription refill that couldn’t be filled. It was now two prescriptions that are in jeopardy of not being filled timely.
I can’t tell you what was more stressful – knowing I couldn’t do anything more myself about any of it because it was officially the weekend or battling the horrible What If thoughts that were running through my mind. We’ve faced medication shortages and minor delays in shipment before, but we’ve never faced waiting endlessly for one of the meds to finally become available.
In the calls I made on Friday afternoon, I finally got a date from one of the kind pharmacists who really wanted to help but couldn’t. Even for her, getting the medication to me is out of her control.
“Call back in mid-February. The stock should be back up by then.”
In a tough situation, I would usually say something hopeful like, “It’ll work out. Things always do.” But this time, facing this pretty serious situation, I’m not in that hopefully-ever-after sort of mindset. I’m worried, especially with the Christmas holiday coming up when businesses will close sooner and stay closed longer. If you are the wishing kind, I’d love it if you could please wish along with me – wish that this medication issue will be resolved and quickly. If you are the praying kind, please oh, please, pray with me and my family, and for other families who are likely facing the same medication refill problem. Lord, help us get the help we need to keep Ronan healthy and seizure free. Amen.
Cathy Jameson is a Contributing Editor for Age of Autism.
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