Thursday, January 17, 2013

My Drive Thru Endoscopy

For those living with eosinophilic gastrointestinal disorders, the upper GI endoscopy (sometime paired with colonoscopy) is a fairly frequent procedure.  As a parent, I have become almost nonchalant about what this process means for my children.  To the casual observer, Overachiever #1 seems to take it all in stride.  From his outward appearance, you would never guess that he is anxious about the process.  But he holds tight to Tigger and his blanket, both of which never leave his bedroom except on these "special" occasions.  Overachiever #2 is not quite as easy to calm.  He really psychs himself out in the days leading up to a scope.  There was a time when it took two nurses to literally peel him off of me!  But now he knows the routine.  As long as we stick with the routine, he makes it through.  But you can see that he is really scared.  We give him control over the little things like what he wears back.  For some reason, the idea of putting on a hospital gown is too much for him.  So the doctors and nurses agree to let him go back in street clothes as soon as I agree that they can cut them off him in an emergency.  Still, it is so difficult that he asked his doctor a year ago if he could stop food trials.  It isn't that he doesn't want to eat like his friends.  It's that he would rather stick with eating the same 4 foods every day than endure more scopes.

Yesterday (technically the day before yesterday at this point in the night!) I went in for an upper GI endoscopy to determine whether or not I have EoE as the boys do.  I am very stuck on how different the process is for the very same procedure when it is performed in a large GI Lab for adults than when it is done in a small GI Lab for pediatric patients.  When the boys have their scopes, I go back to preop with them.  The preop rooms are much like regular exam rooms, with a bed, a couple of chairs and, most importantly, a door that gives some privacy.  There is a basket of toys for the kids, and a TV for me - not that I ever get to watch it!  The nurses, anesthesiologist, nurse anesthetist and GI specialist all parade through checking and cross-checking diagnoses, medications, allergies, loose teeth and everything else that might be important during the 15 minutes that the boys are out of my sight.  Often, there are multiple medical professionals in the room at the same time, all doing their own thing.  At some point, the Child Life Specialist joins the fray with her friend Blueberry.  The boys pull out their own stuffed animals and Blueberry acts out the procedures that are about to take place.  There is a lot going on, and I often feel like I need to clone myself to attend to everyone.  But there is always time to answer questions and tend to personal comfort.  Always!

When I was called back yesterday, I had to say goodbye to my husband in the waiting room.  They would not allow him to go with me to preop.  I was not allowed to take my smart phone with me due to concern over loss or theft.  There were at least 8 beds in preop, separated by curtains that didn't quite close all the way.  The guy that escorted me back dropped a gown on the bed and told me to disrobe completely.  I am not particularly modest by nature, but I was very uncomfortable in that setting.  I felt like no matter which way I turned, some stranger was getting a peep show!  I carefully folded my clothes and put them into the clear plastic bag provided for personal belongings.  Then I sat on the bed and waited.  And waited...  There were no magazines to flip through, no TV to watch and no signs posted where I could see them.  In that sterile environment and without the apps on my phone to distract me, the anxiety that I was already feeling about the procedure increased.  Would the doctor respect my request for an approach that differed from what he would typically do for patients in my circumstance?  What would the biopsies reveal?  Would I have to choose between two equally unappealing treatment options if it turned out to be EoE, or would I still be without a diagnosis for the symptoms that bring me misery?  Would I have anesthetic awareness as I have with previous procedures?  I may be geeky enough to have thought it was pretty cool to hear and feel the (dulled) sensations of having my wisdom teeth cut out.  But I did NOT want to feel the endoscope probing my insides!  I am not one to be anxious about medical procedures, but I very seriously considered walking out.  What kept me there was knowing that I would have to admit to my kids that I was too afraid to go through with a procedure that I have scheduled and delivered them to roughly a dozen times (each!) in the past 4 years.

The first time the boys were scoped, they got a little tour of the endoscopy suite.  The doctors and nurses told them what everything was and showed them the camera that would be taking pictures of the inside of their belly.  The tour is repeated any time they ask for it.  With kids, they typically induce anesthesia with medicine that they breathe through a mask.  That mask is scary for them!  The medicine is yucky and they complain about tasting it for days.  But the IV and other "stuff" is put in after they are asleep.  When they wake up in post op, all that is left is the IV and maybe some oxygen so they don't even know what else they are hooked up to.

Adults don't get the tour.  Apparently we aren't supposed to be afraid!  They took my glasses from me in preop, so everything was blurry.  I knew what most of the equipment was, so that helped.  But then they placed a bite block in my mouth and kept it in place with a collar that felt so tight on my neck.  Logically, I knew what was happening.  But emotionally, I was a wreck!  I felt like I was being restrained and suffocated.  The word torture comes to mind.  At the same time, a nurse anesthetist was injecting medication into my IV.  I get why they do it in that order, but this knowledge did not ease my anxiety.

When the boys wake in post op after a procedure, I am standing by the bed stroking an arm or even rocking them in my lap.    The nurses are all smiling and try very hard to help them ease back into wakefulness.  Most kids get popsicles.  Mine get cups of the best ice on the planet.  Once they are able to sit up and keep down a little bit of liquid, the curtains are fully drawn so they can have privacy as I help them get dressed.  They are rewarded for being such awesome patients with a treat from the prize box.  They get hugs and waves from all the staff.  Their doctor takes the time to tell them how awesome they did.  When they are discharged, a wheelchair is brought and they get warm blankets on their lap for the ride to the car.  By the time we walk into our Home Away From Home, you would never know that they had been under anesthesia, except that they want something to drink rather than something to eat.

I was awakened yesterday by nurses yelling at me through my drugged up fog.  They had a schedule to keep, and the extra hefty dose of meds that I'd been given to prevent anesthetic awareness meant that I was waking slowly and putting them behind.  The roof of my mouth felt like hamburger meat, presumably from the bite block.  My throat was hurt so bad that every breath (in or out!) felt like fire.  My asthma was flaring and so I needed a breathing treatment.  In addition to the scope, my esophagus had been stretched which caused significant chest pain.  I was discharged just as soon as I could sit on the side of the bed unassisted.  My instructions were to start with small amounts of fluids, move to soft foods and eventually solids by dinner.

While my kids are typically back to normal the next day, I am still in major pain.  I am dehydrated because simply swallowing saliva is painful.  I spent all day in bed because it's easier to deal with pain if you can sleep through it.  I have eaten one actual meal of very soft food and don't plan to do that again for a while!  While esophageal dilation is not a typical part of my children's scopes, it is something that is possible.

There are two things that I want to remember and still be working on a year from now.  First is that I need to be more aware of just what it means to take my children to the GI Lab for a scope.  It not "just another scope."  Rather it is an anxiety producing experience, even when you know what to expect.  Second is to take steps to communicate my experience to those who can address the anxiety producing nature of larger GI Labs that treat outpatient surgical procedures with all the warmth of taking and fulfilling an order at a drive thru window.


  1. You should definitely write a letter to whomever is in charge. And if, God forbid, you ever need any other "procedure" you must tell them about the anxiety. They should give you something for that as soon as possible. I had a full blown anxiety attack in an MRI machine. Who knew... I'm claustrophobic. Patients should not have to endure unnecessary anxiety and should be treated with kindness. Be well SOON.

  2. Thanks, Gigi. I will be contacting Patient Relations to discuss my experience as soon as I can speak without increasing my pain, and then I will follow up with a letter. I should know by now that pediatric centers are better than adult centers when it comes to arranging for distraction and a patient's comfort. Somehow it is still a shock every time I require medical care. I need to take my experience and try to change that, at least for the local adult centers, because I have seen what those small steps can do to ease a patient's anxiety.


I would love to hear what your thoughts! Please consider including your name or a nickname. Thanks a bunch for the visit!