12 Questions I Wish I’d Asked My Child’s Doctors at Every Outpatient Procedure

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No matter how many times I sent my daughter into an operating or medical procedure space, it was always unnerving. Though eventually I knew what to expect — and so did she — there was always something I forgot to ask. Sometimes, even if I thought I’d heard the answer enough times that I didn’t need to ask it again, a new anesthesiologist or nurse followed a slightly different protocol, and I’d be caught off guard. Because of that, there were questions I wish, in retrospect, I’d had the presence of mind to ask each and every time. If you’re taking your child in for outpatient surgery or an invasive test, here are some things you might want to ask — and write down the answers in a notebook you can keep handy.

Before the procedure:

1. May I accompany my child into the operating room?

This can make a huge difference for your child and for you. As long as you feel you can maintain your calm in those circumstances, walking your child into the operating room and staying until he is asleep can contribute tremendously to peace of mind for both of you. If the anesthesia team is comfortable with this, be prepared to wear whatever sterile clothing the hospital requires in the operating room. (Bonus: We kept the large, white one-piece operating room suits afterward — they were great for messy projects around the house).

2. How long will my child be away from me?

This is a different question from “How long does this procedure take?” Often, the doctor executing the procedure answered us only in reference to his portion of the process. If a doctor is, for example, inserting ear tubes, he might answer “15 minutes, tops,” but when you add in the time to get your child to sleep under anesthesia, put in breathing tubes if necessary, and then to bring your child out of anesthesia and back out into the recovery room to see you, the total time might be closer to an hour. The difference is huge when you’re sitting in a waiting room.

3. Which specific medications will you be using on my child?

They may be giving your child any number of medications: one or more for anesthesia, antibiotics if infection is a concern, something to combat post-procedure nausea, topical ointments if there is an incision somewhere, or other drugs more specific to this procedure. Knowing this will help with troubleshooting if you notice anything unusual once you’re at home. You don’t want to learn the hard way that they opted not to put anti-nausea medicine in the IV.

4. Can we choose which arm/leg you use for the IV?

This goes for other lines and cords that may get attached to your child. Often they assume that a child is right-handed and put the IV in the child’s left arm. A left-handed child would find that difficult. My daughter preferred the tiny light they taped to her hand to measure her blood oxygen levels be taped to her toe instead — it was less annoying to her that way.

5. What is your Plan B if you are surprised by what you see when you begin the procedure?

There is always the chance that a surgeon or physician will see something once the procedure begins that changes their opinion on the right course of treatment. If the decision needs to be made to do something different, it will help you to know whether or not you’ll be consulted, whether they will send a nurse out to let you know what is happening, or whether the procedure will be put off for another time.

6. How do you expect my child to feel once she wakes up?

Some children come out of anesthesia sleepy and quiet, and some are quite agitated. Your doctor may not be able to predict how your child will react, but she should be able to tell you how much pain or discomfort is likely.

After the procedure:

7. Did you see anything that requires follow-up?

Some doctors will want you to make an appointment to see them in their office a week or more after the procedure, which is a long time for a worried parent to wait to hear this answer. They might be waiting for test results, but they can give you a quick overview of what they saw and what they suspect.

8. How long will my child feel under the weather?

Between the side effects of anesthesia and any pain from incisions or instruments that made their way into your child’s body during the procedure, it would be unusual for your child to be totally back to normal quickly. Knowing what might be particularly bothersome will help you take care of your child more easily in the days following a procedure.

9. What should my child eat and drink in the next 24 hours?

Your child’s doctor will almost always tell you to stay away from red drinks and JELL-O so you can tell the difference between a child throwing up blood and a child throwing up red food. If there are other restrictions, be sure to find out. Some hospitals will issue a standard “bland diet” recommendation, but your child’s doctor may tell you it’s fine to let your child eat his normal diet.

10. Under what circumstances do I need to bring my child back to the hospital?

A low-grade fever after being under anesthesia is not uncommon, but there are other reactions that your doctor may consider worth checking on.

11. If this is a procedure that your child has had before, was there anything done differently this time compared to the last time? 

In the case of my daughter, who repeated the same procedure (endoscopy) many times, it was too easy for us to assume we knew how it went and what would be done. After minimal issues with swallowing after all previous endoscopies, she had very noticeable pain after her next one. When we called the doctor to ask, he mentioned that he’d taken biopsies from much higher in her esophagus than last time. She could feel the difference, even though the doctor hadn’t thought to mention it to us in the recovery room.

12. What is the next step?

Even if you feel comfortable waiting until your child’s next office visit to learn what comes next in recovery or treatment, your child will likely want to know much sooner. If she’ll be limited by the procedure she just had, she’ll want to know how long it will take to be back to normal. If he knows that this procedure is one of several he’ll need, he may want to know when the next one might happen. Getting that answer while you’re still in the hospital with the doctor in front of you saves you a volley of phone calls and messages later on.

Even after my daughter had more than a dozen procedures under anesthesia, there were always new things I learned about her and her health by asking the right question at the right time. It is impossible to plan for everything, but knowing all the things you might need to know gives you the opportunity to plan for your child’s comfort, watch for the things that raise red flags, and avoid worrying about at least some of the what-ifs.

Lead photo source: Thinkstock Images

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Inside The Mighty: A New Year and New Challenges Ahead

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I was excited to get our team back in the office today and start the New Year together. We accomplished so much in our first full calendar year, but we have many challenges ahead in 2016. Over the holidays I took a step back to consider what we’re building, where we’re at in the process and the changes we have to make as we grow. 

More than anything, I was struck by a feeling of gratitude. We’re a work in progress for sure, but our team, our contributors, our partners and our investors have helped build a brand that is truly having a positive impact. As the parent of a child with Dup15q syndrome, I’ve learned so much this year from our community of readers and commenters, both those who have become big fans of us, as well as those questioning our work.

The ultimate goal of The Mighty is to empower people. We’re in the very early stages of building a platform that connects people with disabilities, diseases and mental illnesses and others in those communities – parents, doctors, therapists and more.

Here’s a brief example:

Google the word “fibromyalgia” and you’ll find a wealth of medical information from health sites, but for someone living with the condition, stories of personal experiences can often be far more helpful.

On The Mighty you’ll find dozens of stories like these:

The Impact of Chronic Illness on My Marriage

5 Ways ‘Fibro Fog’ Affects Me

Why I’m Showing These Private Photos of My Life With Chronic Illnesses

That last story begins with the words, “I want to invite you into my life. This will be extremely difficult for me. I’m a private and sometimes quiet person, but what I have to show you is important.” It kicked off a discussion with more than 20 others about their own experiences.

That discussion is what we’re really going after. In the end, the best communities help and support each other. We want to connect people. I don’t know of anything that connects people better than stories. So that is where The Mighty began.

We bootstrapped the operation in the spring of 2014, began 2015 with three full-time employees and we now have a team of 13. Seven of those team members have disabilities or diseases and the other six have at least one family member with a condition. Our purpose is what drew them to the company.

I’m proud to say that our stories have resonated with people. We’ve grown to 200,000 readers a day and national news organizations are covering our stories, giving them a much bigger spotlight. Several of our contributors have gone on Good Morning America, The Today Show and other programs to share their personal stories in their own words.

Our most powerful story in terms of sheer impact this year was that of Jean Sharon Abbot, who was misdiagnosed with cerebral palsy for 30 years. Since it appeared on The Mighty and gained international attention, more than 20 people have reached out to Jean to say they learned of the same misdiagnosis – and got life-changing treatments — because of her story. She’s since published a book.

Video will become a big part of The Mighty as we grow, but it was really just a place for us to experiment in 2015. Still, our very first video — on what it feels like to have obsessive compulsive disorder — won the audience award in a mental health film festival and has picked up more than 750,000 views on YouTube. To help kickstart our video efforts in 2016, a young man who has produced his own videos about living with Asperger’s syndrome is joining our team, working both in front of and behind the camera. He’s got some great ideas in store for our community.

We hope to strike many more partnerships with non-profit organizations this year, but also deepen existing ones. For instance, we’ll be working with NORD (National Organization for Rare Disorders) to offer our contributors opportunities to speak to medical schools about their patient experiences.

The Mighty was designed to help non-profits do the two things needed to accomplish their goals: drive awareness and drive fundraising. You’ll soon see non-profit badges with logos and resource links on our site. We also have plans to help non-profits with funding down the road, but that will come later. We currently have no sales team and no revenue. Our focus is on building the community.

On the tech side, we launched two key features last month. Our new site taxonomy now organizes thousands of stories, making it much easier for readers to find what they’re looking for. Like everything else, it’s not perfect, but it’s a big step in the right direction. And Mighty Voices Portal, our new publishing tool, will allow contributors to submit and track stories more easily. It will also allow our editorial team to get more stories onto the site each day.

Back when we launched, it took more than a week to get our first story submission. It received more than 5,000 visits in its first week and has since been read nearly 150,000 times. At the beginning of 2015, we had 5-10 submissions coming in each day. As we begin 2016, that number has grown to 75-100.

We’re thrilled that we’ve become a platform where people in the disability community want their voices heard, but it also presents many challenges.

We’ve taken criticism from some within the disability community recently over who should be permitted to write and how they should be permitted to write about their experiences. Those are valid concerns. The passions of this community run deep and they are multi-layered. Our team lives with disabilities and diseases so we understand this.

Our goal is to provide this platform for people to share their life experiences in a respectful and responsible manner. We’re discussing editorial guidelines not just internally, but with many others in the community, which will result in updated guidelines for contributors. We listen, we learn and we move forward.

That path forward for us is best embodied by Sarah Schuster. Sarah joined us first as a contributor in 2014, writing about both her personal and family experiences with mental illness. She was steeped in the community, helped others as a volunteer, and had lots of good ideas on how to expand our mental health coverage. We eventually offered her an opportunity to join us as a freelance editor. She did a fantastic job so we brought her out to Los Angeles and made her our full-time mental health editor. Her job is three-fold: she writes stories, edits stories by contributors, and develops partnerships within the mental health community. In her first six months, Sarah has grown our mental health community into more than 2 million readers a month. I’m incredibly proud of her and what she’s done.

I hope one day we have hundreds of people like Sarah on the team, qualified editors who live in the community they help lead. But we are still at the very early stages of this process, and we have to hit many, many milestones to get there. 

Today, our team is excited to get started on year two. Thanks to everyone for being a part of this and to those helping us make this better.

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To the Misophonia That Has Controlled My Life for the Past 6 Years

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Dear misophonia,

Hello, old friend. It’s me, the one who doesn’t like noises. The one who gets upset with people for chewing or sniffing or slurping or tapping their fingers on things or basically doing things that are typical bodily functions.

You have controlled my life for the past six years. You have dictated what I do, where I go and what times I do things. You forced me to arrange my life into an exhausting array of avoidance. I miss out on going to the movies with friends and will never have those dreaded college lecture hall stories to tell my children. I wish I could get through a meal with my family or sit in a waiting room without being driven into an anxious meltdown.

Misophonia, I can’t show people how I am feeling when you cause me to become enraged. The only physical thing I could ever show people to represent the way you make me feel is the imprints on my palms from digging my nails into them. People see me react to a sound or movement that triggers you and become irritated with me for having a reaction. How dare they get irritated with me? It isn’t me, it’s you!

No matter how exhausting you are, thank you. Thank you for stepping back into the shadows of my mind when I am out at a restaurant and many other things are going on. Thank you for teaching me that everyone needs their own adaptations in life and that we are not cookie cutter people. But most of all, thank you for helping me appreciate the tranquility of being alone, the beauty of silence and the times I get to freely enjoy with my family with minimal triggers.

Claudia standing in a park with her hands covering her face
Claudia standing in a park with her hands covering her face
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What Happens Behind the Doors of My Hospital Room

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door in hospital room
Door in a hospital room

Hospital doors hold back the stories and secrets of many unique patients. They block the noises from the outside world, but the outside world is always curious about what is happening behind these doors.

At Children’s Hospital of Pittsburgh of UPMC, they do everything in their power to make their patients comfortable and try to make their stay as enjoyable as possible. There are colorful rooms, healing gardens, the sixth floor atrium and the artwork all over the walls.

Behind the doors of my hospital room, there are beeps coming from my pump on my IV pole and monitors that I continue to hear for days after my discharge. There is a technician that comes in to take vitals every three hours morning, noon and night. There are nurses constantly coming in and out to give me the necessary medications and make sure I am doing OK. There are doctors coming in at all times of the day; some at 6 a.m. and some at 6 p.m.

A wheelchair sits beside my bed so I can get from my bed to the bathroom and anywhere I need to go. Transport comes in to take me to get the required tests done and then bring me back. The IV team is called to come in and switch my IV because my first one went bad. Phlebotomists come in to get my blood work done to try and get a diagnosis.

Not everything that happens behind these doors is bad. The therapy dogs came in and consistently put a smile on my face even when I was at my worst.

Nora with a therapy dog on a hospital bed
Nora with a therapy dog on a hospital bed

During the Christmas season, the Pittsburgh Penguins came to my room to visit and deliver presents. It allowed not only me but all the patients a few minutes to forget they are even in the hospital.

Nora with the Pittsburgh Penguins
Nora with the Pittsburgh Penguins

There are volunteers and workers who try and provide some entertainment with movies or board games. It gives us someone to talk to and have some much-needed fun. They bring in cards that have been sent from family and friends, and sometimes visitors come in. They give you a bit of a social life when you have to have a limited one in the hospital. There are doctors and nurses coming in who really care about you and finally have a diagnosis.

Most importantly, behind these doors lies hope — hope that a new treatment will work, hope for a better tomorrow and hope that there will be a cure in the future. This hope fills every hospital room along with everyone who walks through the hospital’s main doors.

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These Airline Pilots Didn’t Follow Protocol for a Grieving Family

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Two airline pilots saved the day for one grieving family.

Nicole Short-Wibel, from Phoenix, posted on Facebook the story of her family’s recent trip to the airport on their way to the funeral of her father. In her post, which she shared on behalf of her mother who doesn’t have Facebook, Short-Wibel describes her family’s difficulties in getting to her father’s funeral in Tennessee, including delays that resulted in them arriving too late to board the plane. However, after seeing their distraught pleas, two Delta Airlines pilots pulled the plane back up to the gate to allow them to board.

*** PLEASE SHARE THIS SO WE CAN GET SOME RECOGNITION FOR SOME AMAZING PILOTS ***I am posting this on behalf of my…

Posted by Nicole Short-Wibel on Tuesday, December 29, 2015

Read the full post below: 

Please share this so we can get some recognition for some amazing pilots.

I am posting this on behalf of my mother as she does not have Facebook.

My husband of 32 years passed at age 56 of lung cancer on December 16. His last wish was to be buried with his family in Tennessee. After a long ordeal to get everything taken care of, he was finally on a flight Saturday morning and the funeral was scheduled Sunday December 20th at 2:00 p.m. We booked our flight on Delta also to leave Saturday afternoon. Our 3 children and I sat on the tarmac at Sky Harbor in Phoenix, Arizona, for an hour waiting for the OK to fly due to some damage to the cargo doors. We had a connecting flight to catch in Minneapolis and the delay gave us seven minutes to get to the gate.

With only two minutes to spare we got to the gate and the attendant was not at the podium. The sky way was pulling away from the plane. My son and I were waving our arms at the pilots and the ground crew as my two daughters were crying their eyes out. We were pleading for them to not take off. The attendant came out of the sky way and said there was nothing she could do as the door was already closed. We continued to plead, if we did not get on that flight we would miss the funeral. We had to get to Memphis. She contacted her superior who stated there was nothing they could do but put us on a flight to Atlanta and then we could drive. This was not going to work and the plane was still outside the window. My son was still waving his arms and pleading with the pilot through the floor-to-ceiling windows. I was crying and attempting to console my girls when the phone rang — the pilot was pulling back to the gate to let us board the plane.

Pilots Adams and Anderson of flight DL3955 on December 19th, 2015, from MPLS-St Paul to Memphis. Delta Airlines has blessed my family and gave us a gift that no one else could. Thank you from the bottom of our hearts and may you both be blessed ten fold.

Sincerely,
Marcia Short
Nicole Wibel
Rick Short
Michelle Beckman

The Mighty reached out to Delta Airlines for comment but has yet to hear back. 

h/t Metro UK

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To Brock Osweiler, Who Gave a Tiny Fan a Wonderful Christmas Surprise

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Let me introduce myself — my name is Melanie and I’m a coach. Not the kind of coach you’re used to — I’m one you’ll never need. I’m a “food coach” for little kids, otherwise known as a pediatric feeding therapist. Not a lot of people realize that for some kids, eating and growing is hard work.  Seems like growing is something you did pretty easily — all 6 feet 7 inches of you. That’s cool — you’re a good guy and should stand out in a crowd.

Turns out, we’ve got a mutual friend and she’s a very tiny 6-year-old. She’s been stuck at Rocky Mountain Hospital for Children for weeks, having surgery after surgery, test after test. Santa’s elves had to decorate her hospital room for December 25 because she wasn’t going to be able to go home that day.  Her family was going to have to try their best to celebrate Christmas at the hospital — Mom, Dad, sisters and my little friend.

But that morning, you weren’t celebrating Christmas at home either. You and your gracious wife showed up early on the morning of December 25 to surprise the kids at Rocky Mountain Hospital for Children. With your “Bronco orange and blue” beanie perched on top of your head, you made the rounds from room to room, spending time with each and every family on Christmas.

That morning, I saw the photos on Facebook of this tiny tot, who effortlessly grinned from ear to ear, despite the feeding tube and medicines surrounding her. Her dad beamed proudly as you took pictures with all of the family. Clearly, from the look on her big sister’s faces, they were feeling pretty cool to be hanging out with you that morning! Her mom immediately posted joyful messages to update friends and family, quite different from the concerned messages we had been reading for days.

And me, I breathed. I felt such a sense of relief. Our little friend was having one of the best Christmases ever, thanks to you. Full disclaimer: I noticed Santa surprised her with a real-live puppy that morning. But what little girl doesn’t want her own Bronco, too? Lucky kid got both.

With gratitude,

Your friend of a tiny friend

Brock Osweiler of the Denver Broncos with his wife (left) and a young patient and her family on Christmas morning

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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