Friday, March 30, 2012

"Story Story"

Adam has been really entertained by making up stories lately, so last night we tried playing the "story story" game.  This was during yet another span of countless minutes...hours...days (it feels like it sometimes) that found me sitting on my bathroom floor waiting for Adam to get finished doing something.  Whether he is getting finished on the potty, getting done in the tub, brushing his teeth "jusht one mowe time" to be sure he got every tooth, or pretending that the cabinet under the sink is the repair garage for his cars, I spend a LOT of time waiting for Adam to get done in the bathroom!  So last night I decided to try and make the time interesting.  I wasn't really sure if he would catch on to the game, but it turned out to be fantastic!  I wrote the story down right away so I wouldn't forget....I think we're going to type it out and let him illustrate it.  The transcript is below, for your enjoyment!  :-)

**For those of you that have never taken an acting class, improv workshop, or had a really fun english/comp/creative writing/whatever teacher......this is a game where one person starts a story, and then one at a time each person playing adds on to the story to eventually (hopefully) bring it to a conclusion. There really aren't any rules, other than that you have to support the story and keep it going to a natural end.  (i.e. you can't just say "And then they all died." if you're tired of playing!)  I've indicated which lines are mine and which are Adam's in the story.  (Adam came up with the title after we finished writing it.) I was pretty jazzed about how quickly he took to the idea!**

The Princess and the King's Rescue Story

(J) Once upon a time there was a kingdom with a green dragon and a purple dragon.  (A) And once upon a time there was also a King.  (J) The King only liked to ride the green dragon and that made the purple dragon sad.  (A) But the Princess liked to ride the purple dragon and that made him happy again.  (J) So the King and the Princess went for a ride on their dragons.  (A) When they got back they saw their whole castle had disappeared.  (J) They flew to the Royal Magician to find out what had happened to their castle.  (A) The Magician told them that some birds broke the castle with their beaks and flew away with the pieces.  (J) The King and the Princess found the brids and asked for the pieces of their castle back.  (A) The birds said ok, but only if they could build a birdhouse next to the castle.  (J) The King and the Princess agreed, and they all worked together to build the castle and birdhouse.  (A)  The King gave the birds some gravel to play with, and they all lived happily ever after.  The End!

Sunday, March 25, 2012

Doctor Land

I'm pleased to bring you another installment of the "This is why I have gray hair!" show!  Starring me.

Adam is sick right now. I'm hoping that he's finally turning the corner towards improving, after over a week....fingers crossed!  He's had the gnarliest, goopy sounding cough and a fever that started last Saturday morning and didn't go totally away until yesterday.  He's been lethargic, less appetite, increased work of breathing, snotty nose.....not cool.  As an aside...I'm convinced that the word "preschool" is just a carefully crafted euphemism for "drop your kid in a petri dish full of horrifying pestilence and hope for the best." Now, back to the conversation at hand.  After three visits to the primary care doctor, and one phone call to pulmonology, we've got antibiotics, 5 days of steroids for the airway inflammation, and a plan for extra chest pt to get the gunk up and moving.  Proactive.  I like that.  The specific source of my increased gray hair during this last very long week, however, was primary care visit number 2. 

At the point of visit number 2, I had...obviously...already had Adam at the doctor once.  I was told that it was most likely viral, and to ride it out for another 48 hours.  Now, there is a very limited amount of time that I'm willing to let Adam "ride out" a cough and increased work of breathing.....something about the two years on a ventilator and the airway made out of rib cartilage...but what do I know, right?  So, 48 hours after visit one, when the fever was still present and the cough was getting worse, back we went.  On this visit, we saw an attending physicain who I had never met.  It's always someone different covering the acute clinic, so you kinda have to take what you can get.  He seemed pleasant enough upon entering the room, but it all went down hill fast.  He did an extremely brief exam....didn't look in Adam's nose, didn't listen to all the lobes of his lungs, and looked at his belly but didn't actually touch it.  Then he asked me what I felt Adam's problems were.  After I finished explaining the progression of all his symptoms, and how I was especially concerned about the lingering fever, the doctor gifted me with what may, in fact, be the most douchecanoeish comment I've ever heard.  "In Doctor Land, this fever is not a concern."

I'm sorry, what was that?  Doctor Land?  Oh, I've heard of that place...it's just south of Asshatville, on the banks of Did You Seriously Just Say That creek.....right?!  Doctor Land?  Oh dude.  Welcome to I'd Like to Smack the Crap Out of You Town. After staring blankly at said doctor for a moment, trying to wrap my brain around the utter ridiculousness of what had just ensued, I was able to respond.  "Thanks for that," I said, "But I live in Adam Land, where we have a history of prematurity, ventilator dependence, chronic lung disease, subglottic stenosis, and airway reconstruction which makes every symptom of infection a concern.  So I'm going to come back another day when I can see someone who doesn't live in Doctor Land."  And then I snatched the check out form from the poor resident who looked like he wanted to melt into the floor, and I left.  After paying my co-pay.  Again.

Let's not even begin to explore the fact that this guy completely invalidated my concerns, made sweeping generalizations regarding the fact that all symptoms are the same in all children regardless of medical history, and missed the chance to actually find and diagnose the issues that were dealt with in visit number 3.  Let's just stop the bus right at Doctor Land.  Doctor. freaking. Land.  Someday, I'm going to go to Doctor Land.....and I'm going to find that guy.  In the meantime, I've given the office's medical director an account of my unfortunate visit.  Apparently I'm not the only one who thinks that Doctor Land isn't an ideal vacation destination.

Tuesday, March 13, 2012

Ahhh....perspective

I have recently had several well intentioned people ask me questions about Adam.  The first question is "Are you going to get his scar fixed?"  and the second is "Will he always talk like that?"  Since I feel it is in bad form to smack the crap out of generally nice people in public, I shall avail myself of this opportunity to address those questions.  I might swear.  Just sayin'. 

Question #1:
If, as a parent, the worst thing that you can wrap your brain around having happen to your child is that they should have a scar on their neck.....you are so god damned lucky there are not even real words to describe how god damned lucky you are.  If, however, as a parent, you have been told things like "You probably shouldn't leave the hospital tonight, because it could go either way." or "Several of the conditions we're testing him for are incompatible with long term life." then you would realize that ending up with just a scar is sort of the equivalent to winning the lottery while in Disney World.  I don't give a rat's ass about that scar.  If Adam decides he doesn't like it some day, then sure, we'll get it fixed.  In the meantime I'll look at it every single day and thank every single doctor and deity that bestowed their graces on him.  If he didn't have that scar he wouldn't be here. 

Question #2:
For the first three years of his life, Adam couldn't make any noise at all.  His airway was completely closed off by scar tissue, and his vocal cords were fused into one scarred mass.  Then once upon a time the good fairy of airway reconstruction bestowed upon him a miracle of modern medicine.  She cored all the scar tissue out of his airway, and using bits of his rib cartilage, made grafts to hold it open.  Then she separated his fused vocal cords, sprinkled on a healthy shake of fairy dust and POOF!  That shit worked!!  It boggles the mind, it does!!  Three months, one decannulation, and a sluggish left cord later....he spoke out loud for the very first time.   Now all the kid does is talk!  And yes indeed, he sounds like a cross between Froggy from the Little Rascals and the world's whitest Barry White impersonator.  "Will he always talk like that?"  WHO CARES????!!!!!!

Dude.  I feel so. much. better.  :-)  

Monday, March 5, 2012

Confessions of a "chronic" Mom

Adam has a little bit of a head cold right now.  It's really not much of anything but a clear drippy nose and a little bit of sneezing, and he's eating like a horse....so I'm not too concerned.  It's interesting to me now though, since I'm dealing with more "regular kid" situations than medical issues, to reflect on how life as a "chronic kid" mom has warped my otherwise rational mind.  (Don't judge that rational mind comment....leave me to my delusions!)



Steaming away the stuffy nose

One thing I have learned from being Adam's mom is that I am extremely cool under pressure of the medical variety.  I have done emergency trach changes in the car, been covered in blood, trach secretions, and stomach acid, watched a reintubation, seen my child with a heart rate of 40 and oxygen sats so low they stopped reading, and signed surgical consents like it was my job.  I can tell you if my son is tachypnic, tachycardic, cyanotic, retracting, whether his lungs sound clear bilaterally, and if his cap refill is good.  I can piss off an entire medical team in less time than it takes me to shower, and BRING IT insurance companies and pharmacies.  I will eat your livers with some....you know the rest.  If it's go time....I'm going.  You would think then, that the normal bumps, bruises, and germies of childhood would be no big deal.  You would be incorrect.

Surgical consent...boom!

Once upon a time, (just about a year ago) I was pushing Adam in the swing in our backyard.  We were out there for a long time...swinging, winding and then unwinding the chains, seeing how high we could go....all those fun swing related things.  When Adam was finally ready to get out of the swing, I stood him on the ground and he promptly fell over.  I stood him up again, and he fell over again.  The third time I stood him up, he took three steps and then fell over.  And then I flipped out.  I scooped him up and ran upstairs to his room.  I put him on his pulse ox....I listened to his lungs.....I shined a light in his eyes to see if his pupils dilated properly.  My mind was racing with thoughts of all the neurologically horrifying reasons that my perfectly mobile child suddenly couldn't stand up and walk.  And then I noticed him point to his tummy and sign "funny".  I'm sorry....what?!  Your tummy feels funny?!  You mean to tell me that instead of having a stroke you're having motion sickness from being swung and twisted for the past hour?!  You're just DIZZY??!!  I started to do that hysterical laugh/cry thing....you know that thing....fear, mixed with relief, tinged with the unavoidable reality that you're just a wee bit bonkers.  Adam held still for about 5 minutes, and then signed "play trucks, bye" and wandered off to find his toys.  And there I sat, adrift once again in the realization that motherhood, for me, is a whole different kind of party. 

Spring 2011