Monday, September 11, 2006

I am not so different as they were before...

Generations define themselves with certain characteristics. Qualities that, while they might not apply to everyone born of that era, generally seem to fit most of the pack. My grandparents lived through the Great Depression, and therefore learned to save a lot and get by on less.

My parents generation, rocked against authority early on, protesting for the end to war and for the return of peace and love to man. But, as they settled into middle age, their generation carried with it a quality they'd gotten from their elders--to never question medical authorities. When a doctor tells you what you have, what you need to do, rattling off all of that unintelligible medi-speak, you nod your head and say "yes, sir" without so much as a "sir, what was that?"

My in-laws are notorious for this. Whole procedures can have been performed, detailed surgeries to fix complex problems in the body, without even as simple of a question as, "when can he go home?" While my parents are a good 15 years younger than my in-laws, they too share this blind faith when it comes to their healthcare providers.

My husband and I have grown aggravated with them all in the past, wondering why a simple list of questions about your health was so hard to ask a doctor or nurse. Isn't that the very least we should do? No, our generation asks questions and expects answers! When we have a problem, we research it out on the internet, we show up at our doctor's office with our questions, and we don't leave until they are answered, damn it!

Unfortunately, today my son learned the hard way that his parents are not always that different from their non-questioning elders. Sometimes we too make mistakes and are passive with medical advice.

Today, I took my son for what I thought was to be a simple scan of his head, at his pediatrician's request. She wanted to rule out any possibilities of seizures or problems in his brain that might explain his sudden change in behavior at school and his tendency now to "zone out." This was part of a "multi-level" approach that she said she always used, to figure out what is going on--first ruling out physical problems, then moving to checking the emotional ones. It sounded like a good thing to me.

I did not question what was being done. Her office faxed the orders in, gave me the number for the clinic, and I made the appointment rather quickly. I had my son go to school with a note saying I'd pick him up mid-morning for a doctor's appointment, assuming we'd be back to school in time for me to have a late lunch with him or at least for him to catch up with his class at recess.

Instead, we walked into a facility with my two-year-old in tow, and we were told he would undergo a 2-hour procedure where 25-30 electrodes were attached to his head and various lights were flashed in his eyes. I watched as he lay there terrified, too scared to even move, wondering why he was having to go through such a thing. I listened as a nurse explained kindly to him what she was doing, but then turned to me and also explained what the scan would look for--right in front of him. This sweet child, who had put his trust in me as I'd told him about the appointment announcing that it would not be a big deal--that it was just a little scan to rule out anything and he'd be back to school in no time.
"What if my brain is just not big enough for first grade," he'd asked me on the car ride to the appointment.

"Don't be silly!" I'd confidently said. You are a very smart boy and everyone knows that. Look at how well you read to me last night! This is just what the doctor wants to do just to make sure there's nothing that is making it hard for you to follow through and listen in class. No big deal!"

A few hours later, as we left, I stopped him in the hallway after the nurses had left us. I told him how sorry I was that it ended up being such a big deal. I told him if I'd have known, I'd have told his doctor we'd wait on that and just see a counselor first. My son avoided my eyes as I spoke. Then, I saw his lip finally quiver when I hugged him and told him he was the most brave boy I knew and that I loved him. He finally allowed me to see how truly frightening the experience had been and I held him close and tried to make him feel normal again.

A trip to McDonald's and light-hearted conversation changed his mood somewhat, as I drove him back to school. I tried to push aside the anger and frustration I'd felt inside that whole time I'd watched him hooked to electrodes and told to lie still. I was mad at the doctor, for not telling me what the procedure involved. I was made at the clinic for not explaining the procedure when they left their reminder message the day before on our machine. And, deep down, I was so angry with myself for all of it--feeling like this procedure was really not necessary at all. I truly feel like my son's issues are emotional and no physical.

I actually thought I'd done an effective job of getting him to forget what he'd just had to do, until we started walking back into his school.
"Mom? Do you think my brain will be smarter now that I had those wires hooked into my head?" He innocently asked.

My heart sank realizing that while his fear may have dissipated, his emotional well-being was probably far worse off today than it had been when he just thought he was the slowest kid in his class.

As parents, we always want what is best for our kids. Sometimes that desire clouds our judgment and makes us agree to things suggested to us by authorities who do not know our children's real souls. Today, the lesson I learned is that I will never go blindly off a doctor's advice again. I can only hope my son can forgive me for that. That his confidence will rebound and he won't be somehow left with this emotional scar from a parent who let an overly cautious and well-meaning doctor put him through a morning from hell.


Blogger Vanessa said...

This post breaks my heart. I know you feel guilty, but you were doing what you thought was best for you precious son. We've all gone on blind faith from a doctor's orders at least once. Sorry you had to learn such a hard lesson at the expense of your son, but he'll get over it soon. I'm sending you a big internet hug!!

6:35 PM, September 11, 2006  
Blogger Babaloo said...

I too am guilty of blindly following medical advice. My parents too, for that matter. My mother was sick for 11 months and it was only days before she passed away that the word "cancer" was even mentioned.

When you wrote about a "brain scan" I assumed something like an MRI where he would slide through a machine. I would have told my kids the same thing, "no big deal."

Don't feel guilty. You guys will figure this out. Besides I bet he is the only one in his school who got McDonald's for lunch!

7:14 PM, September 11, 2006  
Anonymous Nicole said...

Ok. I live with a doctor, and I still don't always know what I'm getting into. I could pick up any number of honest-to-goodness medical texts right from my living room bookshelf and answer my own questions. But I don't. Not always. It's hard stuff to stay on top of all the time.

Don't be so hard on yourself, Steph. He loves you, and he trusts you, and you have been there for him more times than you have let him down.

That includes today. And some days, all we can as for is that that scale tips ever so slightly in our favor.

10:04 PM, September 11, 2006  
Blogger Thumper said...

You definitely should have been told what kind of scan, how long it would take, and what to expect--and what it was for, exactly. And your son should have had it explained to him by his doctor in age appropriate terms.

They're probably looking for petite-mal seizures, which would explain the zoning out... it would have taken 2 minutes to explain, and there's no excuse for them not being specific. That's on the doctor's end, not yours. They KNOW a person only grasps about 10-15% of what they're being told when to comes to tests and potential bad news.

12:18 AM, September 12, 2006  
Blogger Alison said...

I'm sorry that was so traumatic for you both!

I have to admit, we didn't even mention my son's school problems to his regular dr, nor did we tell her when we took him to the neuropsychologist or when they gave us a likely diagnosis! I guess because she tended to blow everything off & it just didn't seem to have anything to do with her. We later mentioned in passing that he might have ADD, but that's it! What we did was to take his teacher's recommendation to have him evaluated by a Neurology Clinic. He went in for a full day of testing (6 hours), but it was all just talking to people for the most part. They did have him wear headphones for the auditory parts, and raise his hand when he heard a signal through them, but that was as technical or scary as it got. I was still nervous about leaving him alone with them for that long, but he actually enjoyed it (it all seemed like games to him and they were very friendly). But, it had never occurred to us that he could be having a problem like seizures. We really assumed ADD going into it, and wanted them to test his intelligence at the same time, so we got the IQ testing and ADD testing at the same time, and then the auditory processing disorder diagnosis was a surprise to us, but explained a lot. (Doesn't really change anything, but does give us something to tell his teachers so they know how to work with him, and supposedly there are also things audiologists can do to help children improve in this area.)

Anyway...I know what you mean about not questioning the medical authorities. My parents aren't much like that, but my grandparents sure have been, and I'm more like that than I care to admit! Whenever a dr has told me something, I go relate it to my mother, thinking I have all the info I need, and she peppers me with 35 questions I should have asked, and I just sit there feeling dumb for not having asked them! And right now, my grandfather (in his 80s) has been going through multiple surgeries and just been moved into a nursing home, and my mother is dumbfounded that neither he nor his wife ever asks for any clarification or ever questions the dr's orders. He was on all kinds of medications that my mother was sure were causing problems (once he got on them, his personality seemed to change and he lost all appetite), but they wouldn't even ask the drs about it or mention the side effects to the doctors or hospital staff. She seemed to think they would happily take poison if it were prescribed!

8:09 AM, September 12, 2006  
Blogger Northern_Girl said...


It amazes me, on a regular basis, how very resilient little people are. But still, ouch.

1:52 PM, September 12, 2006  
Blogger Nicole said...

That is just unconscionable for them to not have warned you! That is not your fault at all! There's no way of knowing what questions to ask when you have never done that before. It's their responsibility. I am constantly amazed at the mistakes doctors an nurses make. I don't trust them any farther than I can throw them.

Your son will bounce back because he has two parents who love him and would do anything to help him.

5:58 PM, September 12, 2006  
Blogger Carol said...

You wrote so clearly about the experience that I feel as if I went through it with you both! It's probably because I have a first grade boy and can't even imagine the hell you had to to through watching him.

I am so sorry. He WILL be fine. Faster than you.

7:07 PM, September 12, 2006  
Blogger Suburban Turmoil said...

That makes me so sad. As parents, there are going to be things like this that are simply beyond our control. It is part of growing up, unfortunately.

12:58 PM, September 15, 2006  

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