Saturday, January 26, 2013


When we started talking about birthday plans a few weeks ago, the Little Overachievers were united on just one thing.  They wanted to be pirates.  And once they had made up their minds, they were determined to have a pirate party at one particular place with all of their friends.  And I do mean ALL of their friends!  Or at least all of their classmates.  So I booked a location (no WAY could that many kids would fit into our tiny house!) with lots of space and a cool pirate ship to play on.  Then I started shopping.  I got a Jolly Roger flag, pirate hats, eye patches, plastic swords and all sorts of treasure for the kids to go find.  (Have I ever mentioned that I love online shopping?  No way could we have pulled this off with real world pricing!)

I had great plans!  No.  Scratch that.  I had the grandest of plans!!  We were going to set up a treasure hunt.  I even made a bunch of treasure chests!  I was going to give each kid a list of treasure to collect and then that would be their goody bag to take home.  There would be a staged area for photos with an adult taking pictures of every kid in their pirate gear.  We would have games and lots and lots of fun! Have I mentioned that we were going to do all of this in a time slot of less than 2 hours?  Okay.  Fine.  So my plans were perhaps a little ambitious considering the 5 minutes of time that I was allowed to set up before guests were to arrive.  Plus we were 3 minutes LATE to the party, so we had guests arriving before us!
I reluctantly lined up my treasure chests which suddenly seemed too obviously homemade - and not in a good way - to call treasure chests.  (I am actually rather proud of myself now that I've adjusted to the idea of them being used as party props for a bunch of little kids rather than ready for a movie set as I had envisioned!)  Then I tried to do an assembly line for guests to get their pirate gear and treasure.  That was a very big reminder of why I could never be a teacher.  (How do they handle having so many kids RIGHT on TOP of THEM?!)  I had to resort to sending them all to play and calling them back to me a few at a time.  They were allowed to select a sword while I labeled a hat and goody bag.  Then they each filled their own goody bags from the kid-friendly treasure boxes.  A couple of parents jumped in to help draw on beards, mustaches and tattoos with an eyebrow pencil.  Eventually we got everyone dressed up.  They were having so much fun already that it seemed silly to interrupt them with the games that I had planned.  Their ideas were way better than mine anyway!

You are probably asking yourself why I would put myself through this when I had rented out a play place where they typically run parties while parents sit back and chat with other adults.  Guilt.  Plain and simple guilt.  I have been to a whole lot of birthday parties in my life.  There is one thing they all have: cake and ice cream.  If not cake, then another favorite dessert.  But the Little Overachievers don't eat like other kids...  Knowing that we can't give them something as simple as a beautifully decorated, professional quality cake makes me feel sad.  And feeling sad for my kids not being able to eat like their friends makes me feel guilty because they share their allergic tendencies with me.  So how does a mom allay this overwhelming feeling?  She compensates by throwing the best darned birthday party she can so no one will even notice the lack of cake!

I am not creative by nature, so I thought about all of the birthday parties that I attended as a kid and which ones were the most exciting.  I should be able to duplicate one of those, right?!  But I kept coming back to a party that I did not get to attend.  It was in January of first grade, the Saturday after I had missed an entire week of school due to the chicken pox.  My fever didn't break until Thursday night, so I wasn't allowed to go to school on Friday.  According to my doctor and the school, I would have been allowed to return on Saturday if it had been a school day.  But it wasn't.  It was party day instead.  I was sooooo excited to be well just in time for the big party!  But my mom kept me home because she said if I stayed home sick on a Friday that I shouldn't be attending social events over the weekend because that would look bad.  (Yeah, like anyone was going to think that my scabbed over face was from anything but the chicken pox?!)  When I got to school that Monday, the only thing that anyone talked about was this birthday party.  This was in the early 80s when every business that was worth my quarter had a PAC-MAN machine to play.  The birthday girl's mom had rented out the local community center and put together costumes for all of the guests.  Using the lines for the basketball courts, she reconstructed a PAC-MAN maze.  Guests in ghost costumes chased each other around and even had the little "out" box where the PAC-MAN characters who had been caught had to sit to rejuvenate.  It has been three decades and I am still bummed that I didn't get to go to that party!

So that's why my kids have to have the best birthday parties ever.  Because when their friends leave, I don't want them talking about how awful it was that there was not even any cake or ice cream.  I want them thinking it was THE best party EVER, and not even realizing that we didn't serve them anything more than juice and a lollipop made with Overachiever-safe ingredients.  
For what it's worth, I think we may have achieved that.

Our guests greeted their parents with mustaches and tattoos and smiles.  Even the girls!  They immediately started telling tales of sword fights and walking the plank.  I hope that when they see all of their friends on Monday that they are still smiling, even if their parents do refuse to draw on new mustaches.

Wednesday, January 23, 2013

What's In a Name?

Within any community, a change in leadership is unsettling.  Mergers are particularly nerve wracking because combining two similar entities requires compromise.  Each party involved - from the upper levels of management down to each individual employed or served by an organization - has a desire to maintain certain aspects from the previous organizations.  Different people have different priorities, and inevitably someone will not get what they want.  The allergy community is currently undergoing one of these transitions.

The Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI) formed to cause a new organization called Food Allergy Research & Education (FARE) in 2012.  You can read the press release and FAQ regarding the merger for yourself.  Multiple issues are addressed in these articles, including the reason that "anaphylaxis" was not included in the new name.  To paraphrase FARE on this matter, it is important for people to recognize and appropriately address food allergies before anaphylaxis occurs.  A small, but vocal, contingency within the food allergy community has taken exception to the omission of the word anaphylaxis in FARE's name.  A petition has been started demanding that the organization's name be altered to Food Allergy and Anaphylaxis Research and Education (FAARE) to more appropriately represent the anaphylactic community.  

I disagree with the assertion that excluding the word anaphylaxis from the new name hurts anyone in the allergy community.  I have multiple food allergies, as do my husband and both of our children.  Three of us have experienced anaphylaxis related to one or more allergens.  All four of us have less severe food allergies that, thus far, have not led to anaphylaxis.  The assertion that anaphylaxis is the most important thing to know about food allergies is a fallacy.  Ask anyone who "only" gets hives or profuse vomiting caused by food allergens whether their allergy is "no big deal" just because the their airway is not cut off.  Even those food allergies that are milder and responsive to antihistamines (rather than requiring epinephrine) can have a serious impact on someone's livelihood.  When is the last time you managed to remain productive despite severe vomiting or diarrhea or a "simple" case of hives that required sedating antihistamines?  Increased awareness of food allergies means realizing that there can be a variety of symptoms up to and including anaphylaxis.  

My position is that FAAN and FAI leadership made the right decision when they chose to omit "anaphylaxis" from the name of the new organization.  Further, I believe that those who are creating such a fuss over the name are taking resources away from FARE's stated mission.

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.