A day in the life

tube of lubricant
next to the remote control
it's not what you think

I was walking through the living room yesterday and I noticed a tube of KY jelly by the remote. First thought: I should put that away before we lose it. Second thought: Wow, have we used this much already? Third thought: I bet we are some of the only people who don't find it weird to have KY in a bin on the table next to the sofa.

We had left it out after a trach change. No big deal. But it made me think about how weird our day-to-day life is now. It's not weird for us anymore, but to look at it from the perspective of "this is how it used to be, this is how it is now" it IS pretty fucking strange.

For one thing, I use the word "secretions" more than anyone ever should. It is a foul word, with connotations of aliens and slime and slimy aliens. But that's what everyone calls the gunk that comes out of the trach. A face breathing person may have a runny nose, or you might sneeze out some snot. And that's that – it's snot. But when you have a trach and you sneeze or cough or breathe, it's not called snot. You're saddled with "secretions". So we say "secretions" a lot around here because there are a lot of them. It is not my favorite. I'm trying to come up with something better. Bogies seems to work. Or trach snot.

Another thing that's different around here is the amount of time spent on the phone. I think this is probably the case for everyone with Medicaid, not just for people with trachs. But a trach + Medicaid = agonizing hours on the phone.

Sample: Yesterday I called our new DME (the medical equipment company) to find out why we haven't been able to reorder our medical supplies for the month. Turns out they don't have authorization from Medicaid yet. So I call the old DME. They haven't rescinded their own authorization. Even though they said they did. Three weeks ago. I call the old DME back. They say write a letter to Medicaid telling them we're switching DMEs and then fax it. I write the letter and try to fax it, but the fax won't go through. Turns out the power has gone out in much of north Austin. Finally get the letter faxed but now it's after 3pm on a Friday.

Still no medical supplies.

Next I call the specialty pharmacy to order the Synagis for Ike's monthly shot. You're supposed to call 7-10 days before he needs the shot. They don't say if they mean business days, but I'm guessing they do, so I call even though he doesn't need the shot until late this month. "Please enter the new 7-digit extension of the person you're trying to dial." Well, I only have a four-digit extension. After a roundabout fight with an automated phone system I get a voicemail box for the "synagis team". No one calls me back.

Then I need to refill the Tobi. But since we've changed primary insurance policies we have to now go through a specialty pharmacy to get the Tobi, instead of just Target. This means a pre-authorization and mail order. Even though he's been on the Tobi for ages, we have Medicaid, and he needs to start it NOW because he's getting sick. No Tobi until my husband calls Walgreens and says something about "punching someone in the dick" and then suddenly there's a workaround.

Etc.

Can you see how this might make a person stabby?

Add in emails to the trach nurse where suddenly a prescription is called in for more Bactrim. UGH. Then me trying to avoid giving Ike-a-saurus the Bactrim because it makes him not eat and puke all the time.

Add in the swallow study (angry starving baby signing "milk" with both hands, x-rays of him eating, lots of doctors, lots of talking, lots of angst). I need to get a DVD of the study sent to Cincy but the Dell tech says they can't do it because of proprietary computer systems. I call bullshit, but still no dice. Then I'm told they'll send a written report to our doctor here, but not to me because I'm not "allowed" to have one. Um, isn't this my kid potentially aspirating and ruining his lungs and not being able to get his trach out? How is it not allowed for the doctor's report to be sent to me? Because medical records wants me to pay for it. That's my best guess.

This irritation is momentarily healed by our home nurse buying me a surprise sausage wrap so that I am distracted and don't go full-on apeshit in the middle of the radiology department.

Side note: Ike did great on the swallow study. No signs of aspiration, though he is still "high risk" because he is not fully controlling his swallow.

Add in drifting dunes of laundry around the house, a defiant 3-year-old who insists on yelling DAMMIT at me (where does she get that, I wonder?), a book to finish writing, two school visits next week to prepare for, dinner to cook, lunches to make, National Championship football games to lament, and you can see how weird things are getting.

KY jelly on the side table, Colt McCoy pinching a nerve, me saying things like "Hi, Marcy, I don't understand why the Medicaid authorization hasn't been approved yet." And then Marcy saying things like, "Well, the T-19 was faxed over and it was blurry so we had to fax it again but it was still blurry and the Medicaid people couldn't read it so I had to fax it again" and me saying, "ARE YOU TELLING ME WE HAVE NO OXIMETER PROBES BECAUSE NO CAN RETYPE A FUCKING FAX?" And then Marcy saying, "Well you can order some and pay your private insurance copay" and me saying "THAT WILL BE A MILLION DOLLARS. Plus, PLUS, I didn't stay in an awful, smelly, scary nursing home with my medically fragile baby in order to get a Medicaid waiver that insures his medical expenses will be covered ALL SO THAT I COULD FUCKING PAY A PRIVATE INSURANCE CO-PAY BECAUSE YOUR GODDAMN T-19 IS BLURRY!"

This is when I have an anger stroke and forget what this post was supposed to be about.

I am starting to have anger issues. Patience issues. A build up of
frustration. A desire to drive fast, listen to Marilyn Manson, and
punch things.

We were talking about how weird things are. Right.

Seriously. Aliens could land in the middle of the living room, threaten to vaporize us all with their atom-shrinking photon rays and I would be all, "Whatever, green dudes. Could you grab that KY off the floor over there and hand it over? And can you clean this suction canister on the way to the kitchen? Oh, can you also not get your secretions on anything? Thanks."

That would not be an out of the ordinary scenario at all. Just another day. Sausage wraps, secretions, KY jelly, DMEs, T-19s, power outages, 7-digit-extensions when only 4-digit extensions exist, and vaporizing atom-shrinking photon rays.

I have to get out of this house.

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5 thoughts on “A day in the life

  1. oh my kari. that just put my way boring life into perspective. i was just wondering how you were *really* doing the other day. what a nightmare. oy. the red tape. here’s hoping that you get some more GREEN tape in 2010!

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  2. the red tape/insurance must make you insane alone, forget about all the real issues of the little guys health; i am canadian, i only know of waiting a bit for my healthcare.
    i really hope if the aliens really do hit your living room they secrete KY, just for you.

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  3. Kari–I want to try and help you with the medicaid maze. I work for the company that administers medicaid. I’m only in the publications dept. as a tech writer but I know the client relations dept. and may be able to help with future stuff–I don’t know. I just want to help in any way I can. I won’t tell you everything here but there’s so much I can tell you about the system. Let’s chat. Like you have time…but when you do…gotolucy@gmail.com

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  4. Perhaps all of the insurance people should be tied up and forced to watch Bush grinning and laughing at football games on an endless loop. I wish that there was something that I could do to help.

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  5. I think we need to get this blog post to some people in Washington who are trying to reform health care. They need to see what your life is really like and how f’ed up the healthcare system really is. That phone extension thing is the PERFECT example. Seriously. That sounds like sh** from The Twilight Zone or something.

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