Why You Have to Be Your Own Advocate

I hear this all the time, and I know it’s true, but it doesn’t really sink in until it hits home.

The Back Story

We recently discovered that my son has a medical condition that is going to require a pretty intricate surgery. In a nutshell, he has an extra artery that crosses the ureter (the tube that takes urine from the kidney to the bladder) that occasionally causes it to kink, preventing the flow of urine and making the kidney enlarged and painful. That is what causes the side pain he’s had off and on his whole life.

We took him to the ER a few times over the years, but it wasn’t until the last visit, when he was so dreadfully sick that they started doing any and everything they could think of to find a diagnosis, that they finally ran a CT-Scan and discovered the situation.

The only way to resolve the issue is to perform a surgery called pyeloplasty in which a surgeon actually severs the ureter and brings it in front of the extra artery so that it will no longer kink. He will re-attach the ureter, but it will require a stent for about a month until everything is healed and working properly. The really amazing thing is, they do it with robotic technology.

I don’t know about you, but that blows my mind. Up until just a couple years ago, this condition required the typical invasive surgery where they would cut him open and go in to make the repair. Nowadays they do it laparoscopically with a robot, and it only requires 3 small incisions. Time in the hospital is 1-2 nights as opposed to a week, and recovery is 1 week rather than 6.

Sounds grand, doesn’t it?

Well. Sorta. I’ve learned a lot in the past few weeks about asking questions and advocating for ourselves.

The Decision

When you live in Philly and your child needs medical care, the question is always “CHOP or DuPont”?

CHOP is Children’s Hospital of Philadelphia, and it always ranks #1 as best children’s hospital in the country. We’ve personally had good experiences with specialists affiliated with CHOP although it’s located in downtown Philadelphia with all the traffic and confusion that goes along with driving into a big city.

DuPont is in Wilmington, and it’s definitely a stellar hospital. While it doesn’t get all the accolades CHOP does, it still rates highly for many departments, particularly orthopedics, and visiting Nemours/Alfred I. DuPont Hospital for Children (yes, that is the official name… can we say mouthful??) is like visiting a country club. I actually got to tour the hospital at a social media event I hosted for Philly Social Media Moms a while back, and I was highly impressed with the facilities and the level of patient care.

At 2am, after being in the ER for about 5 hours trying to diagnose my son’s issue and relieve his pain and agony, I was given the choice of following up with a specialist at one of our two children’s hospitals. At that moment, the thought of driving into CHOP was overwhelming. I thought perhaps I’d give DuPont a try.

I laugh now, just saying that, but that’s honestly what I said to the ER doc that night.

“I’ve been to CHOP before, I’ll give DuPont a try…”

As if I was ordering off a restaurant menu and tired of eating the same old hamburger, instead of making a decision that could potentially affect my child’s life.

But that’s what I did. I made an appointment with a urologist at DuPont, and the next day I took my son for a consultation.

The DuPont Experience

DuPont is a beautiful hospital and a breeze to visit with a coffee bar located right by the main entrance (holla!) and several help desks with friendly personnel to direct you where to go. It is cheerful and colorful with lots of natural light and an outdoor playground for the kids. They even have valet parking, which might sound like a gimmick, but I’m here to tell you, when you’re visiting a big hospital for a serious medical condition, the last thing you need is any added stressors.

I liken DuPont to a country club, whereas CHOP is more like a meat market.

I was highly impressed with everyone I dealt with at DuPont, and I am sure the urologist we met with is highly competent and would have done a fabulous job.

In fact, everything seemed so cut-and-dried at our consultation that I went ahead and scheduled the surgery and the pre-surgical procedures right then and there.

It wasn’t until we went back for the pre-surg testing that we started to have second thoughts. After my son spent a day having several unpleasant but relatively non-invasive tests (such as renal ultrasound and a nuclear kidney scan, for those among us who are more medically minded) we met again with the surgeon to go over any last minute questions and to find out the results of the tests (which, as expected, were normal because my son was not in distress at the time.)

That’s when I discovered that my son would be #31.

The 31st robotic pyeloplasty ever to be performed at Nemours/Alfred I. DuPont Hospital for Children.

I know it’s a relatively new procedure, but that just didn’t sit well with me.

Long story longer, I spent a few days hemming and hawing and finally called CHOP to get a 2nd opinion.

The CHOP Experience

I was able to get an appointment the very next day with a urologist at CHOP — and bonus, he was at one of their satellite offices in the suburbs, so no inner city driving! YAY!

He met with me, reviewed the CT-Scan and listened to my story. Then he told me his. I guess when a doctor knows he is your 2nd opinion, he realizes you pretty much want his resume.

He is the Director of Minimally Invasive Procedures, and he said that he came to CHOP for the high volume. He spoke highly of DuPont and the doctors there, who I realize are his colleagues and friends. But in stark contrast to 30 total robotic pyeloplasty procedures, he is doing 70 a year plus other robotic surgeries as well.

That alone was a huge mark in his favor.

But there’s more.

He confirmed the diagnosis we got at DuPont as well as the recommended treatment, but there were a few differences.

He would not have put my son through the day of testing we had at DuPont. He said he had all the information he needed with the CT-Scan and didn’t need to put him through any more radiation — unfortunately we had already done that.

He predicted a one-night hospital stay as opposed to the two they recommended at DuPont. Another point there.

And he also wasn’t going to put my son through the colon prep that they had prescribed at DuPont. In the life of a 13-year-old boy, I’d say that alone is a pretty compelling reason to switch.

I find it intriguing that two doctors take such different approaches to the same situation. I’m chalking it up to the fact the second doc has more experience and doesn’t feel the need to be so cautious. I probably should have asked more questions, but since I liked what I heard, I didn’t probe.

The Switch

Despite the fact that we already had surgery scheduled at DuPont, we decided to switch to CHOP for all the reasons listed above. Besides the fact that we’d have to put the surgery off a bit longer, I couldn’t think of a good reason NOT to.

We did have to take my son in for one more consult. If I’d brought him with me for my original 2nd opinion appointment, we would have been all set, but the doctor wanted to meet his patient before he operated on him, which I respect. Unfortunately there wasn’t an appointment available at the suburban satellite office before the surgery date, so we trekked into Philly.

That was not fun.

The CHOP facility is fabulous, I’m sure, but it’s not DuPont. Driving in and parking are stressful. A 1-hour trip took us 2 due to crazy traffic, and we had to park in a big parking garage and walk a mile to find the urology office, which was a madhouse. It’s an inner city hospital for sure.

But it also has arguably the best urology department of any children’s hospital in the world. There were people there who had travelled from other states to be seen at CHOP, and to have this facility on my back doorstep and NOT use it when my child needs surgery seems kind of crazy if you ask me.

What I Learned

I wish I’d sought a second opinion before putting my son through what turned out to be unnecessary medical procedures, to say nothing of a day out of school.

I wish I’d asked more questions at the first visit, like, um, “How many times have you performed this rare procedure with a relatively new technology?”

I’m glad I finally stepped out of my comfort zone and made the call to CHOP.

I’m glad I went to the trouble of making the switch, which required having medical files forwarded and referrals called in and yet another day out of school (although that will be a wash since he won’t have to stay home to do the colon prep).

The next time I’m in a situation when someone I love needs a serious medical procedure, I hope I don’t just go along with what I’m told by the first person I talk to. I hope I have the wherewithal to do my research and ask the uncomfortable questions.

It’s not easy. It’s awkward. It takes time.

And you know what? If we’d gone along with Plan A, it probably would have turned out just fine.

But I feel so much more at peace with Plan B.

So Now What?

The surgery is scheduled for this Friday. Because we are doing this at CHOP, there will thankfully be no colon prep to contend with the day before. Why one doctor feels it’s necessary and one doesn’t, I don’t really know, but we’ll take it.

He can go to school on Thursday and go trick-or-treating that night. He has to stop eating after 11PM, and of course he has limitations on food and liquid the day of surgery.

The surgery takes 3-4 hours, and we expect to be in the hospital one night. He will be out of school for a few days, but fortunately with the weekend and teacher inservice days on Monday and Tuesday, he shouldn’t miss much school at all — probably just the day of surgery.

I’m fortunate that my mom can come stay with the girls so I can be with my son and my husband can be with me — which is really how it shakes down.

And I’m so incredibly thankful that we have two such amazing hospitals to choose from.

I share this story for one reason. (And I do have permission from my son, by the way.) When it comes to medical decisions, follow your instincts.

If you have a question, ask it.

If you have doubts or think you should get a second opinion about something — anything — medical or otherwise, then do it. Preferably BEOFRE you have unnecessary medical procedures, but even if you have and it seems like it’s too late, it’s probably not. It can’t hurt to get more information.

Don’t be afraid to advocate for yourself or your child because no one else will.

boys