Monday, December 7, 2009

Betrayal In My Pocket

As the kids were loading up the car yesterday so they could stay at Grandma's while Tan and I went to the Valley, I snuck over to the corner in the kitchen where we keep the medicine. I pulled out a zip-locked bag that contains all of our old prescription meds and rifled through them until I found Tanner's leftover bottles of Prednisone and higher dosage blood pressure meds. I slipped the bottles into the pocket of my lime green windbreaker and headed out to the car.

On the trip down here, each time I bumped my pocket against something or reached my hand into the pocket, I winced. Hoping Tanner doesn't ask what's in my pocket, or what that rattling sound was - not that he actually would ask; what 12-yr-old pays attention to such little noises coming from their Mom and gathers up enough curiosity to ask?

I have them with me because Tanner has been spilling protein from his kidneys at a rate that signals damage or gradual failure. He's been all over the board the past month, spilling copious amounts some days then trace amounts the next. When we contacted his doctor on Friday with news of near-record high rates of spilling, and the fact that his blood pressure was up again and some of his old symptoms that tipped us to his disease initially had returned, the response was firm: watch him for any signs of swelling - if he begins to swell, give him 30 mg of Prednisone twice a day; if he vomits or gets the slightest fever, get him down here to the emergency department of Phoenix Children's Hospital. If you don't have to come over the weekend, we'll see you Monday morning.

See, swelling in kidney patients means their kidneys are shutting down - in Tanner's case, it would most likely be because the filters in his kidneys have become inflamed, his body's immune response would be too intense, then something happens to the filtering capability and blood and protein escape into the urine instead of staying within Tan's cells and vascular system, where they belong.

Once again, I marvel at the new level of vigilance we keep these days. Used to be, a call from the doctor's nurse would be along the lines of, "If his fever doesn't go away in 2-3 days, call us back," or "just fluids for the first day, then gradually add back in solids over the next few days." Now, we're being told to watch for signs of organ failure. On another evening, several months ago, when Tanner's blood pressure and white blood count were too low, his doctor called me and told me to watch for bleeding from his nose and mouth. I calmly responded, "Ok. And if that doesn't happen, we're good to go?" I actually chuckled when I hung up. The answer had been yes, as long as he doesn't begin hemorrhaging, he should be fine. Well, ok then.

I realized my actions felt furtive yesterday - sneaking the Prednisone into my pocket, being nervous I'd get "caught" with them. I recognized that hyper-aware sensation as the familiar paranoia of youth brought on by good, old fashioned guilt.

I feel guilty carrying these meds around because I know how much Tanner dreads them. He was miserable on this drug that caused his face to swell so much that he was unrecognizable to even close family and cousins. He had painful and damaging side effects that limited him to only walking - no climbing stairs, no running, no P.E. But, this counfounded medication did the job we needed it to up until he took his last dose mid-April, and I'm certain we'll be employing its magical qualities to fight the battle for his kidneys very soon. In spite of its excessive side effects, this wonder drug rescues his kidneys, returns them to their best functioning state, then it rides off into the sunset. It's kind of like being stuck in a warehouse with a bunch of pipe-wielding thugs - as much as you hate to bring them in with their over-the-top dramatic moves and their ridiculously overdeveloped pecs, sometimes you can only count on Jean Claude Van Damme or Chuck Norris to vanquish the attackers.

I know exactly how it will go this morning in the doctor's office: Tanner will calmly take the news from his doctor, nodding and looking her in the eye, striving to betray nothing of his dread. And then, he'll look at me and the beseeching and pleading not to make him do it will burn straight through me.

And, while he's old enough to understand that this medicine is important for him, there will be a part of him that doesn't understand why I, his mother, who is supposed to keep him from unpleasant things, is making him take it.

It may seem like a melodramatic thing - if he needs the medicine, just give him the medicine, and away with the histrionics. But it's one of those details inherent to this relatively new world Tanner lives in that just nags at you like a festering sliver. It's small, but it causes all manner of discomfort and irritation. And, the Mom in me just wishes that if the kid has to have this ailment, that the treatments could at least be painless and lacking in side-effects. Instead, I have to be complicit in all that he endures.

If by some miracle, his doctor doesn't decide to put him back on the meds in spite of his recent instability, then I'll just slip the vials back into that zip-lock bag when we get home and he'll never have to know of that secret betrayal.

If it turns out like I expect, and we have to twist the cap off those darn pills once again, I hope he'll understand that this one element of his ordeal, just like every single other aspect of his condition, I would take on and bear for him if only I could. How I wish we were allowed to stand in for our kids, even if just to take it all away for a little while.

Love from the city,

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