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Health & Fitness

Take Two Aspirin and Call Me in the Morning

So much in life seems to be changing constantly, but one thing that has remained the same is Will's fragile health.  He can turn on a dime from great to awful.  The past week and a few days, my Gabbie has been fighting some sort of cold/sinus thing.  I have a stethoscope and keep an ear on both of their lungs when sick.  One lesson I have learned in all this is, without serious symptoms and a suspect illness, chances of a viral diagnosis are great.  Almost guaranteed.  I only go to the doctor for them now with high fevers, no lessening in symptoms and noisy lungs.  So, Gab's lungs have remained clear, nice breath sounds in both lungs.

Will started with the "crap" last week so I started our typical preventative burst of prednisolone (oral steroids) to keep the lung inflammation down as much as possible.  It is a 3-5 day duration so I opted for 5 days.  Yesterday was 5 days in and I noticed, as we lay and watch a Baby Signing Time DVD, that he was grunting to breath.  That, my friends, is never a good sound with a history of respiratory issues.  Broke out my trusty stethoscope and listened - there were wheezes in both lungs and it sounded like he was working to move the air.  Gave him an albuterol puff on his inhaler, and another, let it "get" to his lungs and listened.  Still not good.  I realized in that moment, for my peace and maybe his comfort, we needed to seek medical assistance.

Now, I make this decision when the nagging in my gut is such that I can't quiet it.  See, every trip into a medical facility not manned by a member of his medical team can be quite exhausting for those of us with him, mentally AND physically.  Headed to EMH Satellite ER, a place we have seen much of in his 3.5 years.  It was where his first pneumonia was discovered at 11 weeks old and where I went toe to toe with many a doctor who didn't really look past his exterior (happy, smily angel) appearance.

If you are a medical professional, know a medical professional in a personal capacity, are related to a medical professional - give them this blog, please.

Now, let me preface all this with saying this - on this crazy path of life, I have met some AMAZING angels on earth in the medical field.  The people you instantly connect with and who actually give credence to what you are saying.  I have also run into many, many who are more interested in what medical school taught them to regurgitate patient after patient after patient and have absolutely no interest in the fact that all that stuff they learned is based on the outcome of the majority.

Will is the minority folks.  His syndrome is diagnosed in 1 in 15-20,000 live births.  Of that 1 in 15-20,000, only 3% have the genotype Will has.  I can't even calculate what that means in terms of how many live births happen before another Will takes his or her first breath.  So when I tell you WHY we don't do something according to "typical" medical protocol, just listen.  I am not questioning your experience or education, please do not question mine. See, this care is a two way street and I'm trying to stay in my lane :)

So as I discuss Will's symptoms and a high level overview of his 3.5 year history, I noticed we had some interesting personalities on board last night. Can anyone explain to me why this urgent care center NEVER has the same two people on shift?!  That one I just can't even explain away.  Anyways, usually the pediatric staff is really great there.  I go there and not to Jacobs CCF in Avon because, if Will gets admitted, they will cab us (via ambulance) to Rainbown, not CCF.  Rainbow is my hospital of choice, plus they allow my daughter to stay with us.  Crucial to Will as he loves having her there as well as easier for her and me seeing as how I am one person being her whole entire extended family.

I don't understand how medical professionals can approach a child to conduct even standard triage procedures and not TALK to them.  Talk to the parents and each other about the patient, in the third person.  I saw visible lack of patience last night and felt us going down a usually volatile road I was all too familiar with. 

As the nurse took his axillary temperature, a feat which freaks my son out in ways I can't even kinda explain (the stick thermometer under the arm is enough to evoke a huge meltdown), Will went into angel freak out.     Growling, pulling at the thermometer, pushing the nurse with his WMD toes. Her reply?  "LOOK, I know you don't like this but if I take it in your butt you will like it much less."  I looked at her.  Really?  REALLY?  That is how you talk to this child who is VISIBLY freaked out at what you are doing?  You are a STRANGER in the face of a child not feeling well doing something, invading his personal space, that makes him freak out.  And you snap?  Deep breaths, I told myself, count to ten, I told myself.  And I did.

Enter the PA, never did see an actual MD last night.  Sometimes that is better.  Last night was not one of those times.  Now let me say, before I get into this, that I ended on a good note.  I usually preface to every medical professional, at this point, when they first encounter Will that he has Angelman Syndrome.  That if they aren't familiar, to please let me know and I will give them high level necessary points they need to know.  It has worked pretty well.  This PA obviously felt the need to let me know how much he knew - oh I love that.  Flexing that brain muscle in a situation I can go toe to toe with you on is a game at this point.  I was chastised, passive aggressively, for medical choices made with many, many  hands on experiences over 3.5 years.  This is not my first rodeo dude, believe that.  So as I have people trying to take Will's pulse ox (another feat he hates), his temp, listen to breathing, I am getting schooled over the noise by this guy.  I repeat the answers to the same questions about symptoms that seem to stump medical professionals when they aren't visible.  Goes like this - no flares, no retractions, good pulse ox, low temperature = no illness.  Uh huh.  There's that med school, majority thing again.  Meet Will - good pulse ox, no retractions, no flares, wheezing, low temperature - and still only responds to steroids and antibiotics.  It has been called RAD (reactive airway disease - or baby asthma in kids to young to test and officially diagnose with asthma).  

So here is where we are - 3.5 year old, history of respiratory issues, diagnosed with aspiration of liquids, Angelman Syndrome, RAD, multiple aspiration pneumonias (upward of 6 in his life that we know of), 3 cases of RSV.  Just finished burst of steroids and capped out his Saturday night by going under water in the pool and promptly taking a big breath in of that lovely weather as SOON as his entire face went under the water.  Mom hears grunting for breathing, wheezes, hard, deep unproductive cough.  No fever.  No retractions, no flares.  I get it.  Not black and white.

Time for a chest x-ray.  S*#@.  I love this.  Now, in an everyday family's life, x-rays may go something like this:  "Now, Johnny, the nice tech here just wants to take a little picture of your insides.  Isn't that cool?  No, I promise it will NOT hurt.  You will hear a bird chirping inside that machine and then a picture is taken.  See, it is just a really BIG camera, just like the camera Mommy takes all those pictures of you with, and those don't hurt do they?  C'mon buddy, be a big brave guy and Mommy will get you ice cream (or shoes in the case of my daughter) when you are done.  Show them how big and brave you are Johnny!"

With Will, x-rays go something like this:  "WAAHHHHHHHHHHHHHHHHHHHHHHHHH" push, kick, scramble, panic in eyes, clearing those lungs, two techs, one PA, techs looking at me like "what do you mean your kid can't stand or sit for these", passing out of lead guards.  Trying to pin my child in a way that just doesn't work for my low muscle tone child is CRAZY strong.  Tech gets clearly, visibly, obviously aggravated when film didn't work because "NO IT WASN'T GOOD HE PULLED HIS HEAD BACK WHEN WE TOOK IT".  Dang girl.  Now, I'm sweating, Will is panicking and I'm getting attitude.  This tech clearly has little patience for little ol' Mom me OR the PA.  She comes in, pushes her sleeves up and says we have to do it again, let ME do it.  

HA!  I look at her, take off my lead guard and hand it to her stating "Oh, you think you got this?  OK, you show me how it is done.".  I stand behind the dividing wall and watch these two grown professionals wrangle my son for a chest x-ray - he may as well have been a well greased piglet.  I laughed inwardly, c'mon peeps, show me how I suck.  Needless to say - that film wasn't good either.  Tech was sweating and kept saying "he is so strong, I have never felt strength like that in a 3 year old - EVER.  His legs, he is SO STRONG.".  No.  Kidding.  Finally, I am not just over protective mama bear who doesn't want to pin her kid down.  This kid is STRONG and scared and has NO understanding of what is happening lady.

As I stood behind that guard wall something hit me -  this was not a new scene, nor would it be for the rest of our lives.  Angelman is so unknown I educate every single time I need emergency services.  I can either get angry and age myself prematurely with high blood pressure OR I can take a deep breath, forgive them their ignorance for they know not better Lord, and educate for my son.  And therein was the true shift.  The treatment of and to us, the tone of communication, the shared adoration for Rainbow Babies & Children's hospital among a seasoned parent and medical staff, a dose of prednisolone to continue the burst and a diagnosis of bronchospasm and we were on our way.

Those scenes and others I know other parents have, just motivate me once I have a chance to recover, to spread the word.  To educate everyone with ears about what AS is, what it looks like, what it does to a kid.  In every respect.  To convey that what a kid looks like, while an integral part of a medical diagnosis, is not the BE ALL END ALL.  Truly, if I had a dollar for every "WHAT A HAPPY BOY" I hear, well I could finally start that novel I've dreamed of writing because I'd be loaded enough to quit my job.

At the suggestion of my best friend Anna, who was by our side through all of this yesterday, I have started to compile a med book with Will's entire history, all his doctors, his meds, etc.  Once it is done, if it is done, it will be carried in my truck and handed to medical professionals in this situation.  Perhaps reading the records written by their peers will make it more believable.  Now we just need one central company where all medical records go, regardless of affiliation, so a patient has a one stop shop for these types of cases.  One hospital gave me all his records (about 1/3 his history) for free, the other wants over $200 for them.  I wonder if I bring the paper and copy them myself if they will charge me that?!  

And as an aside, our walk is being delayed until 2014 to give the planning team a chance to get everything done.  My proposed October timeline, while doable, was far too aggressive to get it all done and live my life, too.  Watch for future details.

And one last thing - if you have no plans on June 26, there is a charity bachelor auction taking place at Wilbert's downtown, benefiting Wags 4 Kids.  Wags is a great organization that trains service dogs for kids with disabilities.  It isn't just for single females, there will be food, drinks, raffles - great night out for a great cause!  Details here:  http://www.clevelandhaveaheart.org 

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