Thursday, August 27, 2009

Visiting the doctor: I love it, I hate it, I love it, I....



I have mixed feelings about visits to the neurologist. I fear hearing negative news, but then I love the high I get when he tells us good stuff. We see Max's about twice a year now, and that's plenty for me.

For the final part of Max's stem cell infusion, yesterday we took him to see the chief of the division of pediatric neurology at Duke University School of Medicine, Dr. Mohamad Mikati. It was necessary for stem cell infusion research so that when Max returns in a year, they'll have a baseline neurological measurement to compare him to.

Back when Max was an infant, I couldn't see enough doctors. I wanted answers, answers of any kind, about what the future held for him. The problem was that some doctors were more pessimistic than others, and they'd only make me horribly anxious. Eventually I came to accept that no doctor was capable of giving me that information, because nobody knew for sure how Max's little brain would heal from the stroke. Doctors most definitely don't know everything about neurological conditions; the brain is still largely a mystery to them.

I felt my usual trepidation. Was Dr. Mikati going to be one of those grim docs? Would he see something bad that our usual neuro hadn't seen?

Max trotted around the office, making friends with the staff and other patients. For a while, he pretended to be an airplane. Then he made a nurse take his blood pressure twice (even though she didn't need to take it at all) because he liked the feeling. Weirdly, the kid also loves to have his ears examined with that ear thingamajig. He points to it in doctors' offices, expectantly.

The good times didn't stop in the waiting area. This doctor, in his sixties, had seen lots of Maxes in his life (our beloved neuro is wise, but younger). After asking a bunch of questions about Max's development and how he's doing now, he told us he thought Max's speech would keep getting better and better—and that he would eventually be able to completely communicate through words. Perhaps not complicated sentences; instead of saying something like, "I'm really in the mood for a beer right now," Max might say "I want beer" (that's my example, not the medical one). He thought Max's hand functionality would improve significantly as well. "He's only six—he has at least ten more years of development," said Dr. Mikati.

Then I asked the one question that I know I shouldn't ask, but I couldn't help myself. Because as hard as I try to not look into the future, it is the thing I always wonder: "Based on kids you have seen like Max over the years, do you think Max will be a functional adult? Will he need to be in one of those special homes?"

The doctor looked at me kindly and said, "Max will come along. While I cannot say for sure, I think he will be mainstream."

No doctor had ever dared to say that before.

I realize it's just one doctor. An experienced doctor, yet just one doctor. And, of course, he could not be certain.

But, WOW. Holy, holy wow.

I felt the tears coming, tears of happiness. "Are you typically an optimistic doctor?" I asked. I needed to make sure, as crazy as it sounds, that he wasn't just an overly optimistic doctor.

He didn't take my question the wrong way. He said, "The little boy I saw before you? I did not have such optimistic things to say to his parents. But for Max, I have a lot of optimism."

After, Dave, Max and I drove to the airport, boarded the plane and as it took off, our spirits were soaring into the sky, right along with it.

25 comments:

  1. Oh, YES.

    My spirits soar, too. What a nice thing to read coming off shift!!

    Much love and joy and hope, hope, hope for Max!

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  2. ah.....that must have felt so good. I do that same thing. I ask doctors all the time to tell me what the future holds for Daniel. I just want SOMEONE to know, give me a light at the end of the tunnel to see. I'm glad for you.

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  3. I am so happy for you - I can only imagine what hearing that felt like. That is the best news ever. Seriously. Max is on his way. :-)

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  4. Fantastic!

    And SOOO brave of you to ask that question ;-).

    Like you, I asked a zillion questions when BC was a baby, and let their responses completely devastate me if they were negative.

    Also like you, I soon came to realise that a lot of what they were saying was (very educated) guesswork. Once I realised that there was so much they didn't know, I stopped asking questions. MUCH to the relief of my husband who is much more of a take each day is it comes kind of guy.

    BUT I am really, really glad you asked that question and got such a great response.

    Yay ;-). I hope that when next you meet this doctor, you'll also be celebrating lots of positive developments due to the stem cell treatment. I too sense great things in the future!! XO

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  5. You said it, Ellen - WOW! Don't you LOVE the good appointments? This really made my day. Max is an amazing little guy and full of so much potential. While I'm not much of a drinker, I'll gladly go out for a beer with him when he's older and let him do the talking.

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  7. It's great to hear things went well at Duke. Go Max!

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  8. I am so happy for you, what a great feeling you describe.

    I had a moment like that, at Noah's 12 month neurology check up- the neurologist who was usually pretty gloomy said to me that he was not worried about Noah, that Noah would be fine. It was the best high of my life.

    I know all too well the dread and the anticipation- Noah has not had to see any specialists for a year now but those feelings come to be like it was yesterday.

    here's to more and more good news coming your way! So glad that the stem cell experience was positive for Max, I didn't bank Noah's and when we were told he had a brain injury it was the first thing that came to my mind ( didn't help that I saw little Dallas on the news about a week after Noah was home from the NICU!) We will definitely banking our next little ones!!!

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  9. I long to hear those words from a doctor. We too have had both optimistic and pessimistic doctors. I got chills reading your post - I am truly so happy for you to hear those words.
    Good luck and much joy to you in your continued journey with your dear sweet little boy.

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  10. Wonderful, wonderful news! I crying tears of happiness for Max.

    Good things are coming for Max.

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  11. What a blessing for you and for Max.

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  12. This is wonderful news. I'm so happy for you...fighting back tears of joy!

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  13. That is amazing! I know exactly how you feel. I have doubts about Evan and he is in a regular school classroom.. for now (for all of his schooling I hope, but you never know). Just some of his behaviors and things he has to deal with give me a bit of doubt. It is great that you were able to get some much needed reassurance about Max.

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  14. Wow! That's so amazing, especially when you consider that most doctors want to err on the side of caution and not get parents hopes up.

    Here's to hoping that one day EVERY child will have a bright future!

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  15. I literally just got a chill from a my head to my toes! Still there!

    I completely agree with him. I think Max accomplishes quite a lot these days and he's still got tons ahead of him too (not to mention some kick-ass family as well).

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  16. Should I say that we now LOVE Dr. M? I think we do.

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  17. That is so awesome! Crying tears of joy for Max!

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  18. This was such a great post to read at the end of a long day. What wonderful news.

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  19. nice looks like u will need to see Dan Habid's f;im

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  20. Gosh -- as a University of North Carolina at Chapel Hill graduate (and therefore a committed hater of all things Duke), I might have to concede that they're not all that bad over there!

    In all seriousness, I am so happy to read this.

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  21. Amazing--I have goosebumps! Isn't it so nice to meet doctors like that? I always figure they MUST exist... but they're hard to find. What an amazing experience you had!

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Thanks for sharing!



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