Saturday, March 13, 2010

Waiting for lower osmolarity

The last of the snow is almost down to ground--black tipped and crusted piles of stubborn ice--and with it goes winter. Rain. Just rain now. No more bracing for snow. The worst was the last couple of weeks, living in between two states. Liminal.

As the snow goes, it reveals all the flaws beneath it--our front steps with their crinkled paint, almost rotten boards. Thank goodness for the handicapped ramp. Grass surprisingly green, but scored by tire and plow tracks. And everywhere, debris. From branches to lost water bottles to the trails of dirt, gravel, and even concrete chunks the snow left suspended for so long.

When the structure of life melts away. Then I am left with sod the plow dug up on my lawn.

We have been left suspended for so long. In waiting room after waiting room. Say, last Tuesday.

A new gastroenterologist for Robert. It took me months to make this appointment. Not what you think--she wasn't booked that far in advance. Our gastroenterologist of nearly ten years died last summer in a tragic accident--he drowned. With him went a sense of security, an intimate knowledge of Robert that few others shared.

Dr. Latimer was the man we called in most of our emergencies, which were legion. Underneath all of Robert's neurological problems are his digestion problems. Clinically, this was always labeled 'reflux.' But it was so much more. Nothing controlled it--not Zantac or Reglan or Mylanta or Prevacid or Prilosec or Culturelle or any of those in combination. Every few weeks, Robert's digestion would blow up--it was gruesome.

Imagine your child is tube-fed. Now imagine that you can't even manage to keep food in the tube-fed child. Not with a pump. Not with gravity feed. Not with syringes. Tube fed because he ate so slowly he gained not a single pound in the year between one and two. Tube fed because, technically, the food can go in more slowly, more carefully, so it doesn't come back up. Surgery because it keeps coming back up. That's the one where they wrap the stomach around itself and somehow stricture the esophagus. This leads to gagging episodes where the child clearly should vomit but can't anymore. It looks like a death scene from a bad production of Shakespeare. Or a horror movie where the villain can't quite die.

People are scared of you and your child. So you go out in public as little as possible. When the child is gagging and refluxing and coughing, people stare at you. Then they look away when you vent his stomach.

We became used to measuring cups full of stomach contents, or more accurately, puke. Gas. Boiling gastritis. The sharp bubbling and popping sound gas makes coming backwards through the g-tube line and into a 60cc syringe. Endlessly. Minute after minute. There were days we did nothing but feed Robert, watch him for signs of stomach upset. Reflux and gag and choke and up it comes and get the measuring cup and syringe, a towel under his chin, and drain his stomach into the cup. Wait for a bit. Put it back (you have to or stomach enzymes become imbalanced). Watch for more signs of distress. Repeat.

But Dr. Latimer was there, always, even when no one knew what to do, with one last suggestion for stamping out the fire. At least for a little while.

Before he died, he did know that biotin was controlling Robert's stomach problems at last. No one knew why, not even Dr. Latimer.

When the structure of your life melts away, you are left with chart pages. Empty prescription bottles. Tubes and syringes. Formula cans for recycling. A new gastroenterologist.

She asked me, why are you here?

It wasn't an accusation. She was one of Dr. Latimer's colleagues at the medical school. It was a way of trying to open up the door.

But I took it as an existential question. I found myself kind of staring at her. Had she looked at his chart? No, but she had some of it on the computer in the room with us. I couldn't speak. This isn't going to work, I finally said. I said it again. I stood up. I put on my coat.

But I didn't want to leave. I just didn't want to go over it all again. Why was I there?

how had I come to be here

I sat down. I started talking.

to stop the sensation of falling off the round, turning world into cold, blue-black space

I spoke for 45 minutes straight. Straight through my fears. From the funny rash and the screaming and the possible intussusception and the falling backwards and the melting into himself and the loss of motor function and Dr. Latimer and Dr. Crawford and ADEM and Dr. Lavenstein and the byproducts of neurotransmitter metabolism and the tests and all the medications all 10 or more of them and the intrathecal baclofen pump and the times we couldn't feed him at all and the weight plateaus and Kennedy Krieger and the biotin and the 20 percent body mass gain and the lifting and the whole crying, puking, screaming nightmare.

sliding beneath a big black wave, another, and another

Robert slept through all of it.

I couldn't stop talking. This is why I'm here. To tell this story over and over again. To anyone who will listen. Because someone somewhere might help. If I just say it enough times.

The new doctor listened. To all of it. Without cutting me off or making me stop. With incredible patience. And then she had suggestions. She would help us figure out how to get the biotin through insurance, if we could. She would put in the new Prevacid scrip. She would write a new letter for our supplies. We should try a new formula with lower osmolarity. Lower solute concentrate (less debris). She knew the one. We could have free sample at first.

I left feeling suspended comfortably once again in my life. Debris swept up. Until the next time the snow melts. The next time the seasons shift.

Then I was back in it.
The War was on. Outside,
in Worcester, Massachusetts,
were night and slush and cold,
and it was still the fifth
of February, 1918.

But I was warm and dry. And Robert woke up. And it was finally March, 2010.

(And, btw, my health is just fine. No more tests.)


Elizabeth said...

It's just madness, isn't it? In the old sense of the word? You write, though, of the madness with such beauty.

Dale said...

Thanks for writing this. Far too complicated to explain why, I don't even really know myself, but important for me to hear this.

erika said...

And I thought WE had GI problems ... I'm so glad though that you've found a doctor who listens and who wants to help. I'm with Elizabeth: you write beautifully regardless of the topic. You write about intussusception and osmolarity and turn it into poetry.

NightSwimmer said...

I'm crying, Jeneva. I feel what you are saying. I would like to keep in contact somehow, though I am in too much pain to blog myself right now. Wishing you a day of light and sunshine, today.

Anonymous said...

thank for share, it is very important . ̄︿ ̄