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.


Kelly said...


With all due respect, WHY are you doing this surgery in the first place? If he won't need the functionality, and the cancer risk is no greater, then why are they telling you to do this? It seems like a futile procedure from what you've explained. Not that you have to explain to me....I'm just curious. I'd hate to see him (and you) have to go through all that if there's no benefit!

Mete said...

That is definitely a big part of our wanting a second opinion.

Obviously it's difficult to screen for cancer if they stay in his abdomen. However, the risk of cancer is almost nonexistent at his age (doesn't usually strike until ages 18-40). So why is the surgeon telling us we need to get the surgery NOW?

Putting the fertility thing aside, wouldn't we theoretically have a few years before it was a real risk factor? And if they're concerned, couldn't we just screen him with a periodic ultrasound every year or so to watch for tumors?

I honestly don't know. Despite the rumors, I'm no "scrotal" expert. And these doctors are general surgeons - I'm thinking a pediatric urologist or some other specialist may have more insight. Hence the road trip.

Sank said...

I have a theory, developed over the last couple years with my Dr. visits that most doctors stopped learning when they came across a theory or care plan, or what ever that they were comfortable with. I also now believe that in spite of they might go to great lenghts to get you to believe, there is more "religion" and less "fact" in medicine.

Bottom line, if the theory doesn't make sense of if you're not comfortable with it, go somewhere else.

As far as the cancer thing goes, it is rare, and non existant before puberty, but if you do think you might want to do it, I would guess it's eaiser now than in the future.

Dream Mom said...

Your thinking is right on the money. And no, I can't believe the medication thing. Always, always, always, trust your gut. Go to Boston, like you wanted to.

I have a little theory that I use for Dear Son. It goes something like this, Dear Son can't be the worst patient in their practice, he can't be the worst patient they've seen all day or we are not in the right place. More often than not, that means the larger cities and the academic medical centers.

You are right, his needs are unique and complex and for the doc to trivialize them as if he's just like other special needs kids, is disrespectful.

One other thing, regarding the seizure medications and surgery, I usually talk to Dear Son's pediatric neurologist and explain the surgery thing and let him decide how it's best to give the medicine. For example, Dear Son goes under to get his teeth cleaned, sealants put on, etc. Once the dentist sees him (we go to a dental center that does almost exclusively special needs patients) then I contact ped neuro doc, he tells me what meds to give him and then writes a prescription for me to take with and give them regarding with the doses and what seizure meds should be given through the IV. He then tells me how to proceed with the medications the rest of the day. He's written instructions for other surgeries he's had but basically any time Dear Son goes under, he's the one who writes the orders for the seizure meds.

I hope this helps Mete. You and I are in the same boat:)