Wednesday, November 29, 2006

His Eyes

"Mom, the toys here are kind of lame," Joseph informs me after scouting around the crowded waiting room for something with which to occupy both himself and his sister.

He's right-- there's really nothing here for children over the age of two.

Ah well. The three of us sit quietly together, occasionally looking up at "The Incredibles," as the movie plays on a small television suspended above the back corner of the room.

My mind starts to drift as Mr. and Mrs. Incredible search frantically for their missing children... our last time here was two years ago, shortly after Joseph's diagnosis. I remember the ophthalmologist saying then that our visit would establish a good "baseline."

I also remember hating hearing him say that, fearing what the term implied.

After nearly half an hour, a young man wearing a crisp white shirt and a tag that reads, "Resident," steps into the room and calls Joseph's name.

The Resident ushers Joseph into a large chair flanked by some odd looking instruments, while Evan and I take the two empty seats in a corner of the small, darkened exam room.

Joseph is handed what looks like a large black spoon and instructed to cover first one eye and then the other, while reading a chart.

He'll be fine.

He's only had this thing for a little over two years-- it can't have touched his eyes.


The exam goes on for a very long time-- the young Resident seems friendly and confident, but there's something I'm not liking about him. Maybe it's how his manner changes when Joseph resists his attempts to put drops of a numbing agent into his eyes.

"Come on," the Resident says in a frustrated voice, "you're a big guy-- this is nothing."

Joseph tries to explain-- "I don't really care about getting shots," he says, clearly agitated, "it's just anything with my eyes really freaks me out and-- "

Before he can finish, the Resident pulls down a lower lid and tries yet again.

Once in, Joseph winces-- telling him the drops sting.

The Resident says nothing, just begins prepping another instrument.

The exam continues for about 40 minutes, until more drops are placed in Joseph's eyes.

"You all will have to sit in the waiting room for another 40 minutes, until his pupils are dilated."

"Will I need eyeglasses?" Joseph asks as we leave the exam room.

He gives Joseph an inscrutable look before responding:

"I don't think so."

I'm really not fond of this guy.

When we return to the exam room, the Resident shines a bright light into Joseph's now dilated pupils, and says "hmm... uh huh," turns to write something down, and then repeats the procedure several times.

All the while, I'm fighting a desperate urge to scream.

Finally, he pushes back his chair, flicks on the light, and starts talking to my son.

"Well, everything looks fine. Just fine... " -- and then his expression is suddenly very serious -- "... but you know that you have diabetes and keeping good control is important. You want to keep that A1c at 7 or below-- stay away from the 8s and 9s -- or else... "

Oh God, please don't!

"... you're going to have some eye bleeds."

I clear my throat, the Resident turns to me, ignores my stricken expression, and continues.

"I had a girlfriend with diabetes, and I know this-- you really want to stay away from those high blood sugars, those two and three hundreds."

Joseph doesn't look at the Resident, just listens to his words while frowning down at his hands.

Only minutes ago, his blood sugar was 247.

"Excuse me," I say loudly, "But I think we need to clarify what you mean by 'eye bleeds'," then turning to Joseph, "Honey, you're not literally gonna see blood coming out of your eyes, it's really-- "

"It's called a hemorrhage," the Resident interjects, helpfully.

"Yes, but it's not as frightening as it sounds" I say, casting a glare in his direction.

"Also," I continue, "while it's certainly important to work toward good blood sugar control, with diabetes you're gonna see some blood sugars in the two and three hundreds-- sometimes higher. It's just unavoidable... "

And now I'm looking directly into the Resident's eyes, "... the HbA1c will also fluctuate, especially in a growing child-- again, because there are so many factors that can influence that number."

The Resident says nothing more.

A few moments later, we're joined by Joseph's pediatric ophthalmologist-- an older, jovial man who immediately praises Joseph for his good blood sugar control.

"You know, I saw a teenager just yesterday who also wears a pump-- I think he's having some trouble figuring it out though. His A1c was in the 9's."

Hmmm... clearly, the apple doesn't fall far from the tree in this practice.

"Well, to be fair," I begin, taking a deep breath, "I'm sure that teenager is dealing with a lot of fluctuating hormones, which can have a tremendous impact on blood sugars."

"I suppose you're right. In medical school I remember seeing an illustration of some scales," the doc says, holding up his hands as if they were the scales, "and insulin was on one side and all the other hormones were on the other." He laughs a little, then turns to Joseph.

"Let's have a look." And after a brief exam, "Well, looks like we won't need to see you all again for another two years. Terrific job. Everything looks great."

As we leave the building, Joseph is very quiet.

"Bud, you're not worried about anything you heard in there, are you?"

"You mean, am I scared that my eyes are gonna start bleeding all over the place?" he asks, smiling. "No -- we already talked about this stuff. That guy was kinda ridiculous, though. It didn't sound like he knew much about diabetes."

Then he pauses a moment.

And as I look down into my son's beautiful, brown, healthy eyes -- he continues:

"But at least he could see that my eyes are okay-- gotta give him props for that."


26 comments:

Chris said...

i busted a gut at "..gotta give him props for that"
Your Joseph is a great dude!

nicolep said...

Sandra,

I don't know why this made me cry. But it did.

Perhaps it's just my own fluctuating hormones - but I don't think so. I think it's that I actually feel protective of this young man I've never met - and that I've had to deal with frustrating ignorance around this disease - and it makes me so damned sad sometimes.

Thank you for your voice out here, Sandra, and for Joseph's - you both provide me comfort - sometimes when I need it most.

Nicole

Shannon said...

Those ops really had no business talking about what range to keep blood sugars.

They HONESTLY think that PWD numbers can CONSTANTLY stay under 200??????

I was pretty enraged at what he said in front of Joseph like that.

This post brought out the mama lion in me.

Allison said...

Haha. I've lost track of how many doctors have asked me about my blood sugars and such. One guy actually asked me what my blood sugar usually was and I just stared blankly.

My eye doctor asks for my A1C, which is a much better gauge of, like, everything than an individual number and we know that. What you really need to tell Joseph, and what I think this eye doctor was implying, was consistent 200s and 300s. Not the individual ones that happen once or twice a day or for several days and then stop. But the ones that are just always there because you don't take care of yourself.

Some people should just not be allowed to talk about anything related to diabetes at all. They should be fined or shot or something.

Sandra Miller said...

Chris-

I almost busted a gut when he said it. :-)

Nicole-

And now I'm not sure why, but your comment made me cry.

Shannon-

"Enraged" -- that's exactly what I was. You should have heard this mama lion roar.

Vivian said...

Sandra- I am so glad that the exam results were good. I have a feeling it won't be long until Joseph is tearing into these types of people all on his own. =)

Minnesota Nice said...

Damndamndamn doctor's that don't have a clue............I want to push them down and step on their heads. Maybe when you go back in two years the older guy will have retired and the resident moved on in his career.
(The "go back to the waiting room while your eyes dilate" scenario is my least favorite - heart pounding/palms sweating).

Sandra Miller said...

Allison-

"One guy actually asked me what my blood sugar usually was and I just stared blankly."

Ryan read this line aloud to me, shaking his head and laughing at the ridiculousness of this guy's question.

And I agree with you about making the distinction between those consistent lasting highs, and the ones that visit, but don't take up long-term residence...

Vivian-

I think you're right about that one. My boy is definitely a fighter-- and a very vocal one at that.

And MN-

Yes, during that wait for his pupils to dilate there was much "heart pounding/palm sweating."

Thankfully, Joseph didn't seem worried at all-- he just kept asking me if his pupils were really big yet, and if they looked weird.

Carey said...

Maybe I'm just overly sensitive, but the resident saying "this is nothing" would probably infuriate me. Thanks for sharing.

cHoCoMiLkRoCkS said...

the main thing i hate about this condition are all the doctors you have to see. each one annoys me and is so crap at their job. that guy was so insensitive!!!!

George said...

you kid is awesome and he gets his awesomeness from his mommy!

Anonymous said...

The eye doctor's insensitivity ASTOUNDS me. Even I, as an adult, fear those eyedrops and blurry vision for that length of time. What the doctor said worried me greatly, because postprandially EVERY time, she is in the 280s or 260s and we have an instance usually once a day and always at site change for 6 hours where her BS is 280 and 300 plus. Can't change the insulin ratio or she will drop before the next meal. But now that the continuous blood monitors are starting to hit the market, these kids will be protected from long-term damage from glucose variability because they will be able to control their blood sugars better than ever before. We must all push for insurance coverage of these new devices. And since I really don't think it will be more than two or three years before most kids are using these devices, I think we can now all take a deep breath and say, yes, maybe in the past, this was true but retinopathy will not be in our children's future. P.S. Minimed rep told me -- for what it is worth -- that they will have a closed loop external pancreas out "within 3 years" consisting of a pump, continuous blood glucose monitor and computer all communicating that should keep them in range 80 percent of the time! Which they are testing right now!

Lyrehca said...

Joseph is in good company--I squirm EVERY SINGLE TIME I get drops in my eyes and my father, a type 2 who's in his 70s, needs to take a tranquilizer before going to the eye doc because of the drops and other squeamish things about his eye.

"Just work with me," I tell the eye-droppers. "Do the drops and ignore my legs shooting around." When I sound confident and like I know what I'm talking about, it makes me worry less about the docs who don't seem to know what they're talking about.

Joseph sounds like he'll be a great advocate for himself against docs who just don't know diabetes. WHen I first went on my pump, my gyn was like, "oh, are there fewer ups and downs now?"

"God no," I said, laughing. "I wouldn't be diabetic if there weren't any ups and downs."

She was pretty quiet about the diabetes after that. Silly gyno!

MileMasterSarah said...

“…beautiful, brown healthy eyes.” I love that. I went to a physical therapy appointment once with a woman who isn’t my normal therapist (she is his wife) and somehow or another my back pain turned into a diabetes thing rather than a back thing. I left really p.o.’d and decided I’d never see her again. I guess what I’m saying is, I’ve listened to lots of doctors and medical officials do this sort of thing over and over and over. Your Joseph is smart for reading into what is important and filtering the rest out.

Rachel said...

I wonder if my lack of a dilated eye exam last year has to do with the "normal" readings I gave my eye doctor when he asked what my postprandial & fasting ranges were. Yes, I'm a borderline case, but that could change at any time.

And I have always hated the drops in my eyes. I am pretty sure my mom had to help hold me down in order for them to do dilated eye exams when I was little.

Bernard said...

Sandra

It's sound like both of you handled a bad visit very gracefully.

As soon as you said that you had to wait 40 minutes for the eye dilation I knew things were going downhill. I think my normal wait is about 20 minutes during which I normally nap as I can't read.

Joseph, I wish I had your presence of mind when dealing with folks like you did. Thanks for giving me a laugh at the end!

Penny said...

Sandra,

Big "props" to you for standing up to those Drs. who think they are right about everything, because they once studied it in medical school.

And, Joseph... he's just awesome. What more can I say?

lagiulia said...

Just came over here from artsweet to tell you that I really enjoy your writing. Your kids sound wonderful. I am so touched by the respect with which you write about your son's experience. He sounds like an amazing boy.

Michelle Freedman said...

Your know your son better than anyone. Please wirte a letter and complain that the resident was inappropriate to discuss "eye bleeds" without speaking with you about it first. How insensitive.

Thank you for writing about this. I have a 7 year old daughter and it is her 6th month since diagnosis. I find comfort in reading your blog.

Scott K. Johnson said...

I really appreciated the fact that while Joseph was probably a little bothered by all that stuff, that he was able to kind of write that doc off as a quack.

Got to give him props for that.

We are really our own advocates, and there will be so many times when we run into medical professional idiots. It's good that he's already able to tell the difference!

Anonymous said...

I also wince when somebody comes near my eyes. I hated getting my eyes dilated. I had heard about it and found another doctor who had an Opto Map machine. It takes a digital image of your retina, i believe; and it gives the doctor or resident a far better idea of what it looks like. Look for a provider on this site if you are interested: http://www.optos.com/

Even if it is not included in your coverage plan, the extra money put out is far better than having painfull dialated puilpils for the rest of the day. IMHO

David Harmon said...

Yeah, that doc was a complete twit. "Oh, this is nothing, I do it all the time, and never mind that you don't". Bah.

Kim said...

Kids, they know the score...your son sounds like a great guy!

purple_kangaroo said...

Ugh, what a frustrating experience. I'm sorry you have to deal with such poor bedside manner and ignorance.

TC said...

I hope Dr. Douche isn't going into pediatric ophthamology. It amazes me how someone with experience in one specialty will talk like they know all about another specialty. I mean, opthamology and pediatric endocrinology are pretty far apart. I mean, while your endo guy would tell you about the importance of eye exams, do you think he'd suddenly start giving you eye advice? I don't think so. You did the right thing, keeping your cool and sticking up for your kid.

Patient Anonymous said...

Wow, your son sounds like he's got everything under control. Good for him! Don't you hate it when you got into some doctors' offices though and you know more than they do? Maddening.