Quest Across the States (7): the Last Day but Not the Last Chapter

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All morning it was there. It lodged in my throat, caught in my breaths, weighed in my limbs. We would find out something today.

Again her first appointment was right after lunch, so we walked the skywalk and went to lunch across the street. The Mayo set up was really amazing. Restaurants and stores are all walking distance inside and out, skywalks and subways. Savannah picked an outdoor table for lunch, with the view of a fountain. That’s where we ate, despite the winds and threats if rain. Its amazing how you treat someone when you know they may be dying before your eyes. We ought to treat everyone that way, yet we never do. The waitstaff was extremely kind to her and to Joseph. Not only were they efficient, but concerned and compassionate.

Then it was time. The pediatric neuro-ophthalmologist was amazing, as was his assistant. She had told me on the phone Wednesday that they had ways, and they did have ways. She used a spinning tube with pictures, which honestly looked like an old fashion child’s toy, to check left and right scanning. She used a wind up toy to check vertical scanning. With a monster on her light, she looked in Savannah’s eyes. With a movie on, she covered Savannah’s eyes one by one to see if she could still see the movement on the TV. Savannah had a brilliant time, until the drops came, but they got them in. Thirty minutes later we met the pediatric neuro-ophthalmologist. He came into the room talking to Savannah. “She doesn’t talk,” Grandaddy informed.

“Yes, but from what I understand, she understands me,” and he continued his one-sided conversation.

She struggled and fought but eventually he was able to see her eyes. It may be the sucker he gave her before hand or the respect he and his staff had shown her, but after it was over, instead of the expected melt down, she returned to giggling and smiling while we chatted.

Her eyes are normal. There is no physical signs of NCP nor any other concerns. Of course this doesn’t mean she doesn’t have it, but it does mean there’s a possibility she doesn’t. It means three weeks of wondering and three weeks of hoping.

The psychiatrist was after the good report. He greeted us in the waiting room, introducing himself to Savannah first. It took me until today to notice, but every assistant, resident and specialist spoke directly to Savannah. They were always complimentary and patient. Not one person at the Mayo Clinic talked around her.

He spent some time with Savannah, and when she was finished, he let her leave with Nana. Then he spent an hour with me discussing medications, medical history, possible future outcomes.

“I suppose my question is really with everything Dr R is testing for, how will that change her meds?”

“It really depends on what she finds. It may not make a difference.” His words were hesitant. You could see them wavy and distorted in the air around him. I knew the darkness of the edges they skirted.

“I know she’s looking for degenerative diseases. I know they’re fatal. I know the life expectancy of some of them is very short. I know medication won’t change that. But I also know she’s looking at auto-immune brain diseases, and with intensive infusion therapy there’s a better outcome. Would that change how she’s medicated or what medications we should be looking at?”

“That’s true,” he said and continued with an optimistic patient anecdote. At the end, he added, “But I can’t say Savannah would have a full recovery, even if it is reversible.” The air again grew thick with waves.

“Dr R and I discussed that as well. I don’t doubt that there has been some permanent damage. She’s been living with this a long time. I know there will be no full recovery.”

His hesitation changed to sorrow, and I watched the wavy air around him deflate. “You’ve already discussed all of that. You’ve had a lot. You’ve had a week.” It was obvious that he wasn’t sure which words to chose. The ones that escaped were faint, hidden in the deflated air, but the sincerity tumbled out between them anyway. I smiled my defeated smile and shrugged.

We discussed possible medicinal changes if there is an auto-immune disease, and if the treatment works. He walked me out with his apologies for not being able to do more, but with the gift of his card in case he could. I wondered if Dr O would become part of her regular team.

It was amazing how separated I felt from the whole affair. It was the same with Dr R. Everything was wrapped in facts and needs. It all felt like a scripted Lifetime movie of the week. But when I was in those rooms, all I could think of was sucking in every fact I could. I wanted to absorb it through my skin and etch it into my memory. I wanted to feast on it, and so I asked question after question with only an emptiness and hunger inside me. No one suspected the black sorrow eating me from within.

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3 responses to “Quest Across the States (7): the Last Day but Not the Last Chapter

  • Rene

    It’s so hard. It just is. I could say I’m so sorry. I could brag on you some more. I could say a thousand cliches. But truly there are no words. So glad you can write so clearly about this. Bound to be at least a little therapeutic. God bless.

  • Theresa Borders

    I know y’all have had such a rough week! ‘Her eyes are norrmal’ is music to my ears. Now to continue our prayers for more good reports! Thank you for keeping us updated. Blessings to all of you.
    Theresa/grandma Tree

  • Teresa

    Thanks for continuing to share the results. Much love to you all. Please hug Savannah and tell her I love her! Give Joseph a super squeeze from me as well.

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