Tuesday, June 27, 2006

Hairy Plodder

I got my hair cut yesterday. This was the first time I'd done any official grooming in almost six months, and it was long overdue. I was beginning to be crushed by the emotional weight of my unruly hair.

My cousin, Dee, is my hairdresser. Unfortunately, she only works part-time at a salon, and our hours never seem to mesh. Every few months I go through a phase where I call her, begging for a few minutes of her time, and she sets a date where I can go to her house. I hate to bother her like that, but by the time I actually call her, I'm desperate.

I got two inches cut off and fresh highlights. I washed my hair upside down in the bathtub with her luxurious $25.00 shampoo and matching conditioner. She did her fancy blow-dry technique, turning my normally "bumpy" hair smooth and straight. The finishing touch was to create lots of little flippy things at the bottom. A very fancy look for the normally un-fancy me.

(I know there are people for whom this is just an everyday look. Me? I'm not one of them. My daily hair routine is as follows: wash with whatever shampoo was on sale that month; condition with whatever conditioner was on sale that month; let hair air dry. Hair dryers are like power tools to me. I just can't figure out how to work 'em.)

When she was finished, I went into the bathroom to get a glimpse of the new, clean, me. I stared at my reflection and was slightly stunned. "I look... like somebody's mother."

In the kitchen, she sounded worried. "You don't like it. Do you want me to do something different...?"

"No, no, I do like it. I mean, I am somebody's mother. I should probably look like one, right? Better that than the ratty mess I was before."

Yet somehow, even though I looked like somebody's mother, I could see a 5-year-old version of myself hidden underneath.

Oh, 1980. Velvet shirts. Gap toothed grins. Dorothy Hamill haircuts. Where have you gone?


This morning, I walked into work and got immediate compliments. Actually. A few too many compliments for my liking.

"Wowwwww, look at you! You look great!"

"Did you see the new girl on our team?"

"I loooove the new style. So shiny!"

"We should all go out drinking tonight! Celebrate your new look!"

Even my boss, a man, who rarely notices anything about anyone's hair, makeup or clothing, said, "Hmm. I like the highlights."

What the heck, people? It's a hair cut. I didn't get an extreme makeover or anything. Tone it down a notch or two.

But thank you all for affirming the fact that, yes, my feelings of frumpiness weren't imagined. I was a scraggly mess. Clearly, I need to up my hair regimen just a bit.

So, what? Every five months? That should do it. Right?

Monday, June 19, 2006

A Vision of Utopia

Finally, someone out there gets it.

To think, one day we might not have to recount Ethan's entire medical history to every medical professional we encounter - from the ultrasound tech to the numerous specialists we see. They would actually be prepared and informed ahead of time. It's an idea that's almost too good to be true.

Which is pretty sad, when you think about it.

Monday, June 12, 2006

Taking The Next Step

First, thank you all for your thoughts on my "kids like these" post. I really appreciate the different perspectives.

Shortly after our appointment, I mentioned the experience to a friend. She has three kids and dozens of doctors in her mental rolodex. I thought she could recommend a local second opinion, or at least give me an idea about how to find a Boston one. She suggested I call Ethan's orthopedic surgeon to see if he could recommend someone.

But the next day, before I had a chance to call anyone, she called me at work. "Okay. Don't be mad. I did something."

Turns out, her cousin is a nurse at the local surgeons' group. She called her about the situation to get another opinion. The cousin/nurse reaffirmed that Surgeon #1 is an excellent doctor (which I never doubted). But if we weren't comfortable, there is another doctor in the group that we should meet before going to Boston. She knows him personally as well as professionally and he's "great".

Honestly, I don't want to bring Ethan all the way to Boston if it isn't necessary. So we're willing to give Surgeon #2 a chance first. I made another appointment with him next week. If things still don't feel right, then we'll try Boston.

The paranoid part of me has decided I'm probably the talk of the office now. Surgeon #1 probably feels hurt and insulted. They have staff meetings and talk about That Crazy Mother, the one who is so sensitive. From now on, they'll tiptoe around me trying not to hurt my feelings.

I shouldn't care, but the possible sensitive label has been bugging me. I'm sure there are people out there who think I should just get over it already. Looking at his exact words, he didn't say anything improper about Ethan or special needs children. So why did his words sting?

I'm not one to be bothered by semantics. In many ways, I prefer Rob's language - Ethan's brain is broken. I don't feel I'm demeaning him by saying that. I tend to use the phrase "special needs" as a catch-all because it's faster than rattling off a list of medical conditions. And when people talk about Ethan, I don't care if they say he's challenged or broken or disabled or handicapped or special - as long as they treat him with dignity and respect. He is Ethan before any of those other labels.

The reason kids like these bothered me had nothing to do with the choice of words. It was the attitude behind them. As a doctor who could potentially be operating on my son, I needed to feel that he was treating Ethan the individual. That he was looking at him as a whole person with unique needs, different than the next child that crossed his door with Down Syndrome or Autism. Instead, I sensed sweeping generalizations about children with special needs; a group that is as diverse as any other group of human beings.

No matter what, I'll hold my head high when I walk back into that office. I know that I'm doing the best I can for my children. If that means I have to bruise a few egos along the way, so be it. At the end of the day, their safety and well-being is the only thing that matters to me, and I have to trust they're in the right hands. Besides, plenty of other testicles will come along for Surgeon #1 to fix. He'll be fine.

And if I have anything to say about it, so will we.

Friday, June 09, 2006

Spread The Good News

This was a good week. Among others:

  • E found a dream of an apartment - just in the nick of time.

  • Dream Mom celebrated the graduation of her Dear Son. This was especially triumphant after the medical scare he recently went through.
  • M&Co's BoyChild reached a major milestone.
With all the happiness out there, it's hard not to feel a little happy, too. (Even if it has rained for 20 out of the last 30 days.)

Happy Friday everyone!

Friday, June 02, 2006

Kids Like These

This week's episode in our Weekly Doctor Appointment series found us at our local pediatric surgeons' office. Part four of: "What To Do About Ethan's Missing Testicles".

At our first visit, the surgeon had confirmed they were nonpalpable. He sent us for an ultrasound where they had further difficulty locating them. By the end of the 2 hour, 2 tech and 1 Senior Radiologist event, they were pretty sure (not definitive) that they found both of them.

No matter what, they aren't where they're supposed to be.

Back at the office this week, the doctor told us that Ethan needs the surgery - orchiopexy - on both sides. As he explained it, the first, and primary reason, is to "retain sperm production". He talked at length about the biological reason for the scrotum and the delicate temperatures involved and blood vessels and details about sperm supply. The surgery is important to maintain his future fertility. Strike one.

The surgeon explained that the second reason to operate is that undescended testicles lead to an increased risk of testicular cancer. He brushed this off quickly. He explained that the risk for testicular cancer in men is extremely low anyway, and while Ethan's risk is increased, it's still very low. But the goal is to move them down out of the abdomen so if a tumor does grow, it's easier to detect.

(Interesting: The surgery doesn't change his chances for cancer. His risk is increased from ever having had undescended testicles in the first place. It stays the same after surgery.)

He explained that he would like to do the surgery in two parts - one side first, and six weeks later, the other. He pointed out that at least half of the doctors in his practice would do both sides at once, but he prefers doing them separately. He doesn't like putting kids through a four-hour surgery. Plus, he likes to let things heal so he can see how the first testicle "reacts" to the surgery before doing the second. Strike two.

While we mulled his recommendation over, I asked about Ethan's medications. He's on a new one since his surgery last March - should we check first to make sure there would be no adverse interactions with the anesthesia? Also, should any medications be weaned down before surgery? Without even opening Ethan's chart or asking a single name of the drugs, he said, "No, we don't need to worry about that. It's not a problem. We do surgery on kids like this all the time." Strike three.

He left the room and sent the nurse in to schedule the surgery. She told us when to call for the details, and moved on to explain the rules of surgery: no eating after midnight the night before, nothing but clear liquids until 3 hours before, and then nothing at all.

This prompted more questions on my part. (I know. Hard to believe, isn't it?) What time would the surgery be? She said they schedule surgeries anytime between 7 AM and 4 PM - it could be early in the morning, or it could be late afternoon. It all depends on the doctor's schedule. I requested a morning appointment if possible; it would be best for the timing of his medications.

Which led to another question - I asked how he would take his seizure meds the day of the surgery. I explained that Ethan cannot drink thin liquids, and that he takes his pills with food. When he had his hip surgery in Boston, they told us to use apple jelly - the closest food to a clear liquid - to give his drugs during the liquid phase. She insisted that this was not acceptable, and he could not have anything other than liquids. "Once you have the dates of the surgery, we'll deal with it then. They can always give his drugs intravenously."

I wanted to tell her: you've already struck out. You can stop swinging now.

I nodded and let her give the rest of her speech. As Jete and I walked to the parking lot, I told him I wanted a second opinion. He agreed. There were too many strikes against them:

  • Strike One: Yes, I want Ethan to retain his dignity, and be a whole, functioning man one day. But realistically? He's not going to be. He's permanently disabled - mentally and physically. He will most likely never walk, talk, feed himself, be toilet trained or live on his own. Never mind find a partner and have children. We've accepted that. So focusing on maintaining his fertility as the primary reason for doing surgery? A mistake.

  • Strike Two: We just don't see the need to put Ethan through two surgeries and two recoveries. I can understand why a four hour surgery seems like a big deal to some parents, but Ethan went through a 10 hour surgery last year. We'd like to get this over with. To mess with his medications, his schedule, pain and recovery time, just to do one side? And then to do it all again a month and a half later? Just seems cruel.

  • Strike Three: The clincher was when the surgeon pulled the "kids like these" line. I understand that as medical professionals, they do see disabled children in their practice. However, in all of our visits to their practice, and all of his other specialists, we have never come across another child just like Ethan.
If I thought faster on my feet, I might have asked him what he meant by "kids like these" in the first place. Did he mean blind children? Or children with CP? Children with mental retardation? Children with hearing impairments? Children with seizure disorders? Or Children with Lennox-Gastaut, whose seizures are not yet under control?

I'm willing to bet that this surgeon has never had another patient just like Ethan. Ethan has a unique and complicated set of medical issues. I'm sure by saying that, he was just trying to reassure us that everything would be okay. Instead, he caused me to wonder about his abilities to treat my son, with all his complicating factors.

When our pediatrician first described this procedure, she made it sound quick and easy. Snip, stitch; in and out in a day-stay procedure. But as the surgeon described the intricacies of the blood vessels involved, and up to four hours of surgery, I started to doubt that. Never mind the problems they had with the ultrasound. What if things aren't cut and dry once they make the first incision? What if something else were to happen? If his seizures increased during surgery? Or he started vomiting in recovery and couldn't keep his meds down? What would they do?

Also, they weren't taking our questions about his medications very seriously. I've been told before that some medications cannot be given intravenously - like his Topamax. When would they deal with that, if I didn't ask?

I've never had a problem with our local physicians. Our medical services are more than adequate. Undescended testicles is pretty common, and this is usually a routine surgery. If we had a typical child, these surgeons would be perfectly acceptable. But as much as I'd like things to be different, I've learned that nothing about Ethan will ever be "routine".

We might have to look to Boston to handle this surgery. It will probably be quick and simple, with no complications, and no issues with his medications. He'll probably be disrupted for only a day or so and then back to his usual routine. But in the slim chance that something "not-so-routine" happens, I'd rather him be there than here. Call me a big-city snob, but I feel safer with him in the big-city hospitals, where his set of medical conditions isn't so unique. Where doctors more likely have dealt with "kids like these" once or twice.

The real question is: has anyone dealt with "parents like these" before? Because apparantly I? Am a nightmare.