Three Months in a Nutshell

It’s been three months since I’ve posted anything about Zane. In fact, I haven’t been blogging at all. Each time I think to myself, maybe I should write I blog post, I completely lose all interest in doing it. Maybe it’s because I reserve most of my free time (what little there is) for working on my manuscripts. 

That said, a lot has been going on with Mr. Zane these days.

Where to start?

Zane has experienced some ups and downs with his seizures, but they mostly seem under control now.

Last month, Zane visited a new rehab doctor who expressed concern over Zane’s wrist contractures. Zane used to wear splints to straighten them out, but he has always been far more functional without them, so I stopped putting them on. They truly were an impediment, and the poor kid already has enough knocks against him. However, I was told that (long-term) Zane will have problems with his wrists and will require surgical correction if I don’t do something to prevent the worsening now. Nobody here wants surgery, so I had him fitted for wrist braces a few weeks ago. We’re still waiting to receive them, as they were a special-order item.

As of March, Zane no longer had hearing aids…not because he didn’t need them, but because they had both broken. On May 1^st, he had both a brain MRI and a BAER study (hearing test) done under anesthesia. The audiology portion of all of this has been one huge mess, which I’ll spare you the details. But based on that study, Zane was fitted for hearing aids and should receive the new ones next month.

Now for the big (bad) news. At the end of May, I took Zane to his check-in appointment with the orthopedist. The May appointment was scheduled to x-ray Zane’s back to see if his TLSO was doing its job to slacken the pace of his progressing scoliosis. Unfortunately, all that wearing of the uncomfortable back brace was for naught. Zane’s curvature increased by 12% in four months. That is so not good. Scoliosis in and of itself is not problematic. But how it impacts the respiratory system (the lungs) and the liver is. Bottom line, Zane has to have spinal surgery…this year. And, of course, it comes with potential complications and risks (including potential paralysis). But if he doesn’t have the growth rods placed, he will die. So there really isn’t a choice in the matter. Zane’s current orthopedist is a very nice man with a great bedside manner. But he’s young. Only been in practice for four years. When I asked, “Have you done a lot of these surgeries?” (before I knew the short duration of his practice), he told me, “Well, I wouldn’t say a lot.” That doesn’t work for me. So we’re getting a second opinion next month. There’s no question he needs the surgery, so the second opinion is more of a scouting mission to find the ideal surgeon for Zane. 

I never, NEVER cry during Zane’s appointments. But I almost did when I learned the news about his need for surgery this year. I knew it was coming, but just not this soon.

So that’s the last three months in a nutshell (a rather large nutshell). It may be another three months before I post again. Then again…maybe not.

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.