Wednesday, June 27, 2012

Our next trip to Children's

Right at the beginning of our little trip to OKC to see family, we had a trip to Children's for Ryan's eyes.  You can click right back there on the grey if you missed that.

I told you how frustrating the appointment in itself was.  The residents did a great job, but the surgeon who we've known in the past to be very helpful was just not the same that day.  He spent about five minutes after we'd been there over and hour and a half looking at the screen with Ryan's information- the information the residents, Ryan, and I worked so hard to gather, might I add- and dropped the bomb that he needs an EUA (exam under anesthesia) to get a good read on his pressures.

All the frustration of the visit itself would have lent a clue to the doc that this kid might have a hard time with the EUA process, but he wasn't there for it.  Surely they communicated, right?

I was so toasted from holding Ryan then desperately attempting to console him over and over that I think I just stood there with my mouth open when the doctor said he'd like an EUA.  He double checked, told me how long it had been, and my roasted brain could only say "okay."  Inside?  My head was screaming "Are you NUTS?!? Say something!  The man is right in front of you!"  But my exhausted emotions won.

One of the sweet residents who had been with us the whole time told me that he saw a slight discrepancy with the prescription for lenses that the other doctor (not the surgeon, the ophthalmologist) gave us last spring, and he said he'd like us to wait while he called him.

Apologetically, Mr. Sweet Resident led the hot mess that was Ryan and I to the inner waiting room, the place where we'd waited for Ryan's eyes to dilate.  His eyes were still dilated, he was still confused and quite unhappy.  I sank down in the chair-ish couch-ish thing, holding my exhausted and spent little man, and all I could think was "This is crazy.  I can't see an EUA happening." Somewhere between that thought and the sheer emotional exhaustion of the day, I kinda lost the ability to do much more than go through the motions and keep Ryan together as best I could.

Thankfully, I didn't have to mess with scheduling.  They went and found Eric for that.  And oh, did I mention that the whole time Eric was waiting in the outer room with Richie and Maelynn, and part of the time I waited with Ryan I could hear her crying?  Just not our best day.

Fast forward a bit, and after some time to process and throw it around with some of our favorite counsel, we called Children's to talk about the EUA.

The last time we did this was when Ryan was three.  We were even more in debt than we are now from several things, not the least of which was paying for the two surgeries and six or so EUA's from the time he was three months old to the time he was three years old.  Once autism was spoken as a possibility, between dealing with that, a job change, and trying to pay our bills we decided to hold off on the EUA.  Last spring, we thought we were in the clear when we had his pressures checked much the same way as we did this month.

Seeing the screen, when Eric called the first person in the queue at Children's, he got the same pat answer.  You know, the one where you can practically hear their eyes rolling.  "We deal with special needs kids all the time, we're used to it."

Suuuure you are.  Thanks, dude, but let me speak to someone else.

So a few transfers and different phone calls later, Eric reaches the surgery center.  All along the way we're not quite getting blown off, but shifted.  Finally we reached a nurse who knew more of what she was dealing with.  She told us that there's always a PA in charge of each kid as they come in, and she had one in mind she wanted to call us, but that she was with patients right now.  Okay, cool.

The whole time we're preparing what they need to know.  Little huge things like the fact that the kid won't wear a band aid for more than twenty seconds.  Like his communication skills... or lack thereof.  We've done this before, yes... but we've done it when Ryan was a baby through preschooler, not as a seven year old who could really hurt himself.  I can't tell you how many times I've pictured Ryan yanking an IV out, or jumping up out of bed and hitting some of the plethora of tempting buttons in the recovery room.

We also discussed the fact that we're able to tell these people thanks, but no thanks.  There are other doctors and hospitals in the world.

Then, just when we were beginning to think no one was going to listen, just as we finished lunch, the phone rang.  It was the PA.

Eric began telling the PA what Ryan was all about.  Our concerns, our fears, our desire for Ryan to not only be safe but not hate medical professionals.  About five minutes into the conversation, Eric gets my attention with wide eyes, a huge smile, and a big thumbs up.

The PA has a son with autism.

She gets it.

They had a nice, long visit about things.  She said that she'd work on getting us put in the regular surgery center, where they have walls instead of curtains between beds to keep Ryan more contained. She said he could bring along the iPad.  She's going to work to get him scheduled in the OR first thing so that he can be in and out before it gets too crazy.  We also learned that they don't assign anesthesiologists until the night before, but that she'd work to get us a flexible one... one who would listen and be willing to make sure the IV comes out before Ryan wakes.  And get this... she's going around taking as many pictures as she can of all the places Ryan will see so that we can plug them into his social story app on the iPad.

We're still not thrilled about having to do this, but God's providence in giving us this PA, this mother with a son with autism, to stand in the gap.  To translate a bit.  Okay, a lot.  And boy, are we relieved.

Thanks be to God for his providence and his sweet peace!

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