Windows

Monday through Friday I have a relatively small window of opportunity to write. It is after I drop the boys off at school and before I go off to my outside-the-home job. I almost always love this window. It offers beautiful views of vivid locations in my mind, lets in characters I’ve created and come to love (sometimes even hate a little), and allows me to breathe in story lines that keep me engaged as a writer.

Except when something comes up. Like…phone calls or issues with medical supply companies or the incident that cropped up today with Zane’s ENT.

That’s when the window slams shut on my creativity, and I transition into advocate mode. Let me tell you, writer-me and advocate-me are incompatible. They don’t feed each other’s strengths. Not in the least. When advocate-me emerges, writer-me shuts down. Completely.

Zane’s ABR was canceled on March 10^th due to illness. It was rescheduled for today. But some information came to light last Friday about this sedated ABR—mainly the fact that he wasn’t scheduled for an ABR at all. His ENT and staff referred to it as a BAER (which I’ve found out is essentially the same thing as an ABR).

Side note: ABR=auditory brainstem response test involves connecting electrodes to the head (usually under sedation) to measure hearing.

But apparently, a BAER study was not enough for the ENT. On his schedule: making incisions in Zane’s ears, placing tubes in them, and draining fluid. That is so not what I want. That is so not what he needs. Plus, that was never even discussed during consultation. Now I know this is the legal side of my mind blurting out these words, but what about INFORMED CONSENT? My paralegal mind cuts all sorts of pathways over that one.

In hindsight, Zane's sickness turned out to be auspicious. Because if Zane hadn’t gotten sick and I hadn’t canceled his “ABR” and the surgery center hadn’t asked for cardiology clearance as an after-thought and he hadn't started running a low-grade fever on Friday, the procedure would have happened (without informed consent).

Thankfully, I spent the day investigating and had some wonderful people assist me in discovering that the ABR/BAER does not entail cutting, that Phoenix Children’s audiology department will gladly do an ABR without incisions or tubes, and that we are now transitioning to a new audiologist who will be forthcoming and do what I want.

Though I spent the better part of my day (minus my outside-the-home job hours) addressing these issues, they are now resolved. And hopefully that creative window will open back up again tomorrow. 

Welcome Spring...and Pink Eye

Zane was scheduled to have surgery tomorrow morning. I canceled it. He’s going into his third week of illness, which started with a fever and cold-like symptoms. On Friday, it seemed as though things were improving for him, but then he took a turn for the worse over the weekend: goopy eyes, a cough, and lethargy. And, as many of you may already know, an increase in his seizures, since sickness lowers that threshold.

Diagnosis: Secondary infections: Sinus and conjunctivitis (aka, pink eye). I suspected the pink eye, but didn’t think sinus infection under my persona as Medical Mom. Sometimes I seriously feel as though I should wear a superhero costume with two Ms printed on the front.

I’m picking up Zane’s antibiotic and eye drops later today, and Zane should be well on the road to recovery. A couple days and we may actually be able to get out and do some bike riding in this beautiful weather! Plus, it’s baseball season, and Zane’s older brother made it into the Minors. Super exciting. I’d like to get Zane out to the field, too.

Medical Marijuana

For the past two weeks, Zane has been sick—winter respiratory issues, which he and his brother seem to pass back and forth. He finally appears to be on the mend. But just as I’m able to temporary stow away the Albuterol, nebulizer, and saline solution, another issue arises. Zane’s seizures (under control now for just under a month) have reappeared. He’s had three of them this week.

Well-intentioned friends and family have suggested pursuing medical marijuana. As with everything medical (including my own cancer treatment options in the past), I have to research things first. And here’s what I found from the Epilepsy Foundation of Colorado:

Those who promote the medical use of marijuana often include treatment of epilepsy in the long list of disorders for which marijuana is supposed to be helpful. In fact, multiple states now have laws allowing the prescription of marijuana for the treatment of epilepsy. There is, however, very little scientific literature to back up these claims. 

That said, medical marijuana does not seem like a viable option for Zane. At least not at this moment in time.

I’m waiting to hear back from the neurologist’s nurse to find out what steps the doctor wants to take with this recurrence. According to mg per kilo dosing instructions, Zane still has some wiggle room with his current drug. I suspect he will wind up with yet another increase soon. The goal is to be seizure-free with zero breakthroughs. He’s not yet reached that point, but hopefully he’ll be there soon.

We’re certainly grateful for his neurologist and her nurse who take Zane’s medical welfare seriously.

You're So...Really?

I hear you (believe me, you’ve forced me to listen): Freedom of Speech.

I know the argument; it’s been used to death: Literary license.

But guess what? Those excuses to say or write disparaging and hurtful things in reference to a whole population of beautiful people are just that…excuses. And I, for one, am so done with them.

You know the word I’m talking about.

Retard.

Or retarded.

Or ‘tard.

I’ve heard people use it to mean “stupid” or “foolish” or when addressing someone who is not acting the way he or she should be. It is meant to link someone’s less-than-intelligent behavior with cognitive disabilities, Down syndrome, CP, and Trisomy 18 to name just a few, thereby victimizing and undervaluing people who have never done a single thing to harm anyone else. These are people who are loved, people who bring joy and happiness to others’ lives, and people who have no control over their diagnoses. But you can control your language. You can show compassion.

I’ve lost respect for writers who have used the word in their screenplays, directors who have allowed it in their films and television shows, and authors who’ve inserted it in their books. I don’t give a @#$% about literary or poetic license or if the word fits the character. Get an f---ing dictionary! You’re a writer, for goodness sake! Whether spoken or written, it’s time to display some sensitivity. To stop discriminating.

Today is Spread the Word to End the Word Day. Please think before you speak. Please realize the pain you inflict when you casually toss out the r-word. In the end, the ones who use the r-word are the ones who come out looking like the least educated people in the bunch.

Compassion and awareness go a long way.