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

Comments

  1. says

    I can so identify with this right now! My husband has some back pain and we’re working through how best to treat it. After talking with a couple of friends this weekend – and hearing their experiences – we’ve decided to try a different specialist than the one our family doctor recommended. I don’t know how many steps we’ll have to go through to deal with this, but I’m glad we’re taking action and getting informed.

    Hope all goes well for your son on Friday and that he has a swift recovery!

    • says

      Yes, at this point, just having the correct diagnosis is such a blessing! He has suffered with this for so long, and that night in the ER I was terrified I wouldn’t get an answer. I’m so thankful for that doc who pushed thru and got that CT-scan.

  2. says

    Best of luck with the surgery and recovery. I will be praying for you all. We do have some of the best doctors and hospitals Around here. I go to mainline fertility and I was in their west Chester office for the convenience of it and not having to be in Bryn Mawr which is like the crazy CHOP experience with traffic and parking and uh just overwhelming. My point though was second and varying opinions of Dr.’s even in the same practice. The level of care and aggressive treatment is so much better with my new dr even if I dread the meat market location. I still can’t get over how opposite their approach is.

  3. says

    So glad you shared this, prayers for him and you and family and doctors and healing and I am glad to be reminded to keep second opinions in mind always.

  4. RS says

    An adult friend just had this procedure and had her stent removed after a month. (She also researched the docs in De and Pa) She went with Penn and a top rated urologist. She also had different surgical prep and options from the doctors. What they didn’t tell her and what she didn’t anticipate was the discomfort of the stent. It is sizable and makes urination, moving, sitting, lying down, etc while it is in. Keep that in mind for school and make sure you advocate for him there as well. He may need some accommodations.
    Prayers for all for a wonderful outcome, and great health.

  5. says

    I’m thankful for this reminder. When a medical crisis happens, we just do the next thing, and our frazzled brains want advice and quick solutions. It’s hard to remind ourselves that we should hesitate, wait, seek more advice, and possibly change the game plan. That’s hard.

    One thing. I have a friend who used to live in Philly and went to CHOP often with her child. (Do you know Jeannette?) Anyway, they always took public transport, and loved the ride, and found it very quick and doable. Sounds like it would be much more pleasant than your driving experience. Just at thought. I hope all goes smoothly, and you have your boy home recovering with you in no time!

    • says

      Yes, Paul wanted to take the train that day and I thought it was more trouble than it’s worth. It’s always a crapshoot, the traffic around here. We live a ways out, and the train isn’t really on our way, so I thought it wasn’t worth it. Live and learn, I guess!

  6. says

    I’m SO glad you thought to get a second opinion. I live in a small town of about 800 people and we have a WONDERFUL clinic/hospital with three great doctors. But sometimes I think they (even doctors in general) get used to the mundane, day-to-day sicknesses that blow through. I find when my kids are sick with something a little more serious, I usually have to drive the 80+ miles to get my kids to see their pediatrician. Praying for you, your son, and your family as you all go through this process! YAYY for moms being advocates!

  7. Cathy says

    Jo-Lynne, I just spent 20 days with my teenage daughter at Chop for Guillain Barre Syndrome.. I will tell you with out a doubt, you have made a smart decision. The care she received was top notch, they genuinely care for your child and work to make sure they are as comfortable as their illness will allow. While the inconvenience to us is valid, the care for your Son will be most important. When he is finished with his experience he will be able to feel he was respected and had the highest level of care. We had another hospital experience for an occurance she had in May and there is no comparison in the comfort she felt just in how they cared for her. Just my opinion, but I hope you find some encouragement with my story. Yes, its busy there…but the reason is the care. Prayers for your family during this anxious period. The Lord will be holding him in HIS hand and rest assured in that.

  8. Susan says

    Ureters can be very close to the colon and when you go in with a tiny incision and robotic instruments – caution and a clean colon can be a good thing. I give a hearty amen to the stent comments above. I’ve had patients with them who were fine and then when I had one last February for an extensive abdominal surgery – — eh, not such a pleasant experience.

    What it boils down to is you as a consumer have a right to hear different recommendations and approaches. It sounds like you have someone who has done this procedure a LOT and who feels very confident…and that is a good thing. I’m glad you pushed beyond your comfort zone and found someone you feel good about! I wish you and your son well!

  9. Susan says

    And you brought up another good point about children and radiation. Most parents do not know that a CT = a HUGE amount of radiation. Like more than 50 + Xrays! As a parent you have the right to really question the point of a CT, whether it really changes a diagnosis and an intervention, etc.

    • says

      True, and I guess I really didn’t know that either at the time, and yet, it was necessary to get this diagnosis so I’m glad the ER doc went ahead with it. I could tell he didn’t want to. The whole thing is so frustrating. The urologist would have pinpointed it without any tests, but most general practice docs don’t see it enough for it to be on their radar without more invasive tests like the CT-scan. And I get why no one did it before, and I generally appreciate a less drastic approach to diagnosing medical issues, but sometimes it gets to the point that enough is enough and you’re willing to do whatever you have to do to find out what’s wrong. Anyway, what’s done is done, and now we move on and hope for the best. :-)

      • Susan says

        Hopefully you didn’t think I was being critical! I was being the opposite!! It is live and learn with CTs. I was saying you have now educated LOTS of Moms out there about radiation. A lot of times they are totally and absolutely indicated (as in your case)..but in other cases parents are just not informed and it’s sad. You did GREAT!

  10. Niki says

    I have to comment – we just went to CHOP for a second opinion on a urology issue that we had previously been using Johns Hopkins. WHAT A DIFFERENCE. We aren’t officially ‘going with them’ – one more meeting/appointment so we can see what their ultimate plan is, but the recommendation you have for their urology department speaks volumes. I’ll wait in traffic, drive an extra hour (we’re 1 hour away from Hopkins and 2 from CHOP) all for better care for my son-in what I feel like Hopkins messed up and did it a few times. I was led to believe I had the best of the best there and so when we prayerfully looked elsewhere this fabulous chief of urology has taken to our case! I am so kicking myself for not going sooner-but just glad that we found this before it was an irreversible problem. (My son is only 4 and has had surgery for this now 5 times….and the last ‘mistake’ and then blame of me for their hospital/doctor work was off my patience limit!)

    Good luck Friday! I hope everything goes well!

    • says

      wow Niki, that is so scary. of course Johns Hopkins is one of the best, but I guess ultimately it depends on the doctor you get and the situation you’re in. thanks for sharing your story. I hope everything works out with your son.

  11. Bonnie S says

    My husband had the same condition when he was a baby and went through three operations. It’s genetic and when I was pregnant, we had to monitor to make sure my son doesn’t have it. The operations went well, the only concern is now he has higher blood pressure because of what happened and the medicine he was one then. Praying for your boy…:)

    • says

      Thank you for your prayers. Strangely, my uncle had this condition as a very young child!!!! Actually, a bit different – not an artery, but rather a blockage of the ureter, but still required a similar procedure.

  12. Barbara says

    When My daughter was 3, she went to A I Dupont for a trapped ulnar nerve which was the result of a broken elbow which damaged her growth plate. When we went everything was in the mansion. She was in a ward prior to the surgery and it was one big room with tons of kids. Her elbow was never the same, but it never stopped her from anything. I can’t blame the dr for that–it’s just how it healed. It was minor thing compared to the children I saw. Spines that looked liked pretzels–just terrible deformities and problems. I thanked God that she had a minor problem and almost felt guilty for taken the dr’s time. She’s 36 so that was a long time ago. Saying a little prayer for your family.

    • says

      Isn’t it funny how those experience stick with you for years? DuPont supposedly has a fabulous orthopedics dept. And truly, I’m sure the urologist we saw is fantastic. I just feel better going with someone who has done more of this procedure. Thanks for taking the time to comment, and for your prayers.

  13. says

    Although I am very sorry you are all going through this, thank you SO MUCH for sharing your story and for allowing others to learn from your experience. Good luck today, sending out lots of hugs and extra-good vibes to you all, Jo-Lynne <3

  14. Meredith says

    What a great post, Jo Lynne! I will keep this in mind the next time one of my kids has a medical problem. Lots to chew on.

    I will say a prayer for you and David today!

  15. says

    LOVE this post. I work for the largest medical group in my area and I love reading patient feedback and experiences like this – it really motivates me to share the ideas and common themes with my executive teams! Best wishes and prayers for you and your little man. It sounds like you made the perfect choice and I hope he has a speedy recovery!

  16. says

    You are a great mom and advocate Jo-Lynne! I could write a book about the concept of self-advocacy. It’s really hard work but so important. I hope the surgery went well and that your son is home and feeling as well as he can tonight.

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