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Story Time

This is the story of some glucose strips. That we need. But cannot get.

Because Collin is on the ketogenic diet, we monitor his blood glucose and ketone levels daily to ensure his health and safety. This is especially crucial during times of illness, not only because blood levels can go awry during sickness, but also because those blood levels provide a valuable clue to us as to what may be going on. So, glucose strips would have been particularly useful during Collin's mysterious illness earlier this week. Too bad we didn't have any.

We have used the same glucose strips for five years. However this year, our insurance company (which has also been the same during those five years) decided that it now had a 'preferred brand', which was not the one we use. I'm sure this move had nothing to do with any kind of financial deal struck between the two companies.

However, you can't use different brands of strips in the same monitor. So we would need to get a new monitor. Except the new monitor doesn't support ketone strips. Which are nonnegotiable. 

So we need the dreaded 'prior approval'. This requires the doctor's office to call the insurance company and simply say, "Collin needs to stick with the strips he's using because he also needs ketone strips for medical reasons." That's it.

I won't bore you with the dozens of phone calls or the multiple failed faxes or the truly impressive passing-of-the-buck by various people. I'll just say this: no one can seem to manage it.

So that poor box of glucose strips sits languishing at the pharmacy, a few feet away from where I stand when I go discuss things with the pharmacist regularly. I could take them home for a mere $200, but I have this crazy idea that the insurance company who has been paying for them for five years should continue to do so. 

And, make no mistake, they will.

Detective Doctor Mama

There is no other time that Collin's inability to communicate hits home quite like when he isn't feeling well. There is no "Mama, this hurts," or "Mama, I'm hot," or even "Hold me, Mama." 

And so, when something is amiss, I become Sherlock Holmes crossed with Dr. House. Crossed with an animal mother.

That's what happened yesterday. Collin was happy as could be in the morning. After his nap, he seemed uncomfortable. Then he had some digestive distress. As the afternoon progressed, I kept him close to me. I tested his ketones, monitored his temperature and heart rate. I smelled him and felt his skin and watched him, watched him, watched him. His signals were all off, his cues all wrong, but I couldn't add up the pieces into anything that made sense.

I started tweaking his food and supplements. I texted the doctor. And we both stayed by his side as his symptoms worsened, guessing and fumbling our way through.

Right before bed, Collin turned a corner. He suddenly seemed more himself. He went right to sleep and the symptoms disappeared just as mysteriously as they came. I kept him home from school today and can definitely see the effects of yesterday on his strength and stamina. But, for all of my expertise and observation, I still have next to no idea what happened. It's rare disease parenting at its most humbling and disconcerting.

The Gift of Permission

Confession: I have always secretly kind of enjoyed being sick. Not the symptoms, of course. But the permission.

Permission to stop. Permission to rest. Permission to accept help and take good care of myself and say no to things.

This week I developed the mother of all sinus infections. And even though I felt so horrible that I cried a time or two (or six), even though it is tricky coordinating Collin's care when I'm out of commission, I still felt that old familiar relief because I knew that nothing would be required of me until I felt better.

So, I gave myself permission to knit, doze, watch Christmas movies, and read. I stayed in my sweatpants and on the couch. And as I started to feel better physically, I noticed that I was feeling better mentally and emotionally, too.

Maybe my one of my New Years resolutions should be to give myself the gift of permission sometimes when I don't have a headache or a hacking cough. It's a thought.

On Thinking You're Watching Your Child Die

There's this thing that happens whenever we enter a new phase with Collin: we remember the possibility of the worst, and we fear it.

One of our worst hospital stays.

One of our worst hospital stays.

The mean-spirited me likes to give myself a hard time about this. Pull yourself together, woman. People send their kids to school all of the time. Or: Calm down, this isn't that big of a deal.

But then the other me, the slowly growing part, the one who is learning to stand up for myself, steps in. She slides an arm around my shoulders and says, Whoa, whoa, whoa. Of course she's afraid of that. Don't you remember the things she's seen?

Namely: my child turning blue. Over and over. My child seizing violently. Over and over. My child in situation after situation that mercilessly reminded me there was nothing, nothing I could do to help him.

When you think you're watching your child die, you suddenly find yourself on the other side of a line you didn't know existed.

You may work hard to get yourself back to a healthy place. You may become productive and self-aware and happy.

But an unexpected phone call may never again feel benign. An unfamiliar situation may always crawl with terrifying possibilities.

The good news is that passing a point of no return doesn't have to be all bad.

Because you may also revel in the little joys of daily life and overflow with gratitude for the health and safety you enjoy. You may marvel at the mere existence of this resilient little person.

So yes, my phone is turned up and in my hand today. I'm a little jumpy and distracted. But I am also prone to drifting away on the thought of my son in a classroom with other kids, and I am buoyed by the miracle of that small thing.

This Rare Night

On nights when Collin is sick, I sleep with my glasses on.

I leave the screen of his video monitor lit, glowing blue over my pillow. He doesn't call out when he needs me. He doesn't make noise when he's distressed. Much relies on being able to open my eyes and, in a glance, assess the situation.

When he is congested, we use an oxygen tank instead of the BiPAP machine, and the change makes it hard for me to go to sleep. I am used to hearing every one of his pressurized breaths and seeing the dark straps of the mask, so the small shine of the nasal cannula and the low whir of white noise feel strange to me.

But on those nights, we use a pulse oximeter. Collin's sleep has improved so much that we don't use it on typical nights, but the monitor becomes a way for me to find sleep on the nights Collin isn't well. With alarms guarding safe upper and lower limits, its silence is an assurance. When the little red light on his finger probe flickers to life, it becomes possible for me to drift off, because if his breathing or heart rate are veering off course, the probe will tell the monitor and the monitor will tell me.

Invariably, however exhausted I am, the morning after a night like this has a special sweetness. Maybe it's feeling glad the night is over. Maybe it's being especially in tune with Collin's needs or the long hours of togetherness. But on those mornings, he looks even more like a miracle to me than usual.