Medical Supply Company A
Mom: Hello, I got a recommendation that your company is a great place to order diapers and other medical supplies through Medicaid.
Rep: That's wonderful.
Mom: I'd like to get some information about how to obtain diapers. I have a disabled child who is 4.
Rep: Diapers? Well, what are your other needs?
Mom: We only need diapers.
Rep: Ha ha ha! (wipes tears of laughter that are rolling down face) Don't you have other medical equipment?
Mom: Yes, we have a wheelchair, a communication device, and a combination copy/printer/fax machine.
Mom: No, we do not have a g-tube, breathing equipment, catheters, or any of the things you're thinking of. I realize that we are very lucky.
Rep: Well, that would be very challenging. Usually patients need more supplies than that.
Mom: Okay, well, thank you and I'll call you when we have more supply needs.
Medical Supply Company B
Mom: Hello, I got a recommendation that your company is a great place to order diapers and other medical supplies through Medicaid. But there's something else. I'm about to tell you what we need to obtain, so please don't laugh.
Rep B told us that it was no problem to get diapers and that they are called "incontinent supplies." They took down the size and brand of diaper that we have used previously. As soon as they got approval, they shipped out a package with two types of diaper samples. The first one was almost big enough to fit me. The second one looked fine until we tried it. It gave our little patient a sort of chemical abrasion or debridement of the foreskin. I tried them two days and got the same result both times, and it disappeared when the old brand of diapers was resumed.
The rep called to ask how the diapers were.
Mom: One was too big, you know, the. . .oh, what were the brands called again?
Rep: Well, there were blue ones and white ones.
Mom: Oh! (mentally switching to convenient new naming system for diapers)
Mom: The blue ones fit, but they gave him aaaa, rash every time we tried them.
I was stricken with partial inability to communicate, just at that crucial moment. I think it was a pre-existing glitch triggered by the new diaper terminology. What I meant was "chemical abrasion."
Rep: Oh, no! Did you try the moisture barrier cream with the diapers?
Mom: Um, no, you didn't send any.
This is factually true, but what I meant to say was "The skin reaction was not on his buttocks, it was on his foreskin, and I don't want to use that product in that area. Also, you didn't send any."
Mom: Our local children's hospital uses Brand X and they work fine for him; do you think we could access those?
Rep: I'm going to speak with someone and see what we can do.
Mom: Thank you. (Hangs up phone.) Arrrrrrgh!! Abrasion! Foreskin! Why couldn't you say foreskin abrasion?
I admire the moms who matter-of-factly can state which types of IV adhesive cover their child can tolerate and not tolerate. I don't envy their need for it or any other medical supply. I know they came to their simply-stated knowledge by trial and error too.
There must be a term for what happens when we know exactly what needs to be conveyed, and we can't convey it at the right time. Maybe ICV, for inability to convey verbally. If you don't experience this, well, it's a cousin to the near-universal inability to make snappy comebacks when addressed rudely or absurdly. Anyway, it happens to me with doctors. (Also, unfortunately, with any person I like.) For me, it is kind of like intention tremor, because the more I would like to say something, the less able I am to say anything at all. The good news is that it prevents me from saying a lot of the odd things that are being uttered in my let's-cut-the-small-talk mind.
Or, if I get started speaking to doctors who we have known for a while and who welcome discussion in their exam rooms, then I notice that I can't stop properly for the other guy to speak. Of course, it takes time to get comfortable with someone, and time to allow the existence of the number of sentences that need to be said. This is an amount of time that today's medicine doesn't always have. So I will need to learn to not just speak truly and clearly, listen, process, and speak again; I will need to do all of that in brief summary form. All of our physicians have probably been carefully trained in how to make the most of their 15 or 30 minutes. We, on the other hand, have had no training and have the same number of minutes in which to interact regarding: somewhere between 1 and 50 things, which are all probably emotionally charged.
Last fall we saw one of John's specialists and much of the time was spent updating him on events and symptoms. I left there thinking, "Gosh, I would have liked to hear what that guy has to say. Next time I am going to ask him to talk and make a deliberate attempt to not interject while he is speaking." Three months later, we returned to that specialist, my resolution intact in memory. But...we didn't see him, we only saw his very nice, calm and smart nurse practitioner.
It didn't matter. I was just practicing.
I tried it on her anyway, but she had nothing big and new to say -- except, with sincerity, "Just let us know anything we can do for you."
Well, you can do a lot worse than that.
And the diapers? It's totally normal for things to not work out the first time with insurance. Insurance is like rain, snow, high heat, and wind. They oppose us at times. But it's often possible to make use of what they do provide.
Update: I had to reopen this post and update it to create a title, because just as I was putting it into the posting window, John burst into the room, kneel-walking, over his normal clothes wearing a black Spandex homemade scarf with silver polka dots, and a stunning turquoise straw hat with a hatband made of tiny white bead-flowers. The hat was covering his eyes.
"Wow! John! Look at your outfit! That hat is fabulous!"
"My, hat, is, nice."
I came over and kissed his hands. Kissing and exclamation points aren't the sole activities in our family, but he earned it with the hat.
"My, scarf, is nice, too."