Dear Doc

Dear Doc -

Once upon a time there was a beautiful little girl.  She was very special but, as in all fairy tales, she was given certain challenges.  As soon as she was born she was whisked off to the first doctor, but he reached deep inside her heart and made it strong.  His magic would allow the girl to live a long life and run fast. The girl's parents were well pleased.

Her parents then took her to the eye doctor so she could see all the flowers and story books.  They took her to an ear doctor so she could hear her family laugh and the dogs bark.  There were other people for her feet and still others for her neck - courtiers abounded.

But some of these doctors gave her shots and stuck needles in her arms.  Sometimes she would visit a doctor, fall asleep, and wake up feeling sick in a different place.  That was scary.  One time the little girl was very, very ill and stayed in a hospital where they had the temerity to vacuum her nose like a peasant.  Once they actually held her trying to get pictures!  Audacious paparazzi!

The girl did not care for these gross invasions of personal space.  Their paltry compensation - stickers! ice cream! - was beneath her and she scorned it all.  (Well, maybe not the ice cream but it was wildly insufficient.)

The girl began to believe her parents had abdicated their duties.  She ignored their entreaties and became an expert at spotting and eluding anyone with medical training.  If cornered, she would roar like a dragon and fight back.  Hard.

Though she was impressively fierce, this made her parents sad.  They loved her very much and wanted her to have all the flowers and laughter.  They believed these alchemists could help, but they wanted her to be happy too.  Confusion and darkness spread across the land.  

But then the girl met you, Doc.  She watched you coax reluctant patients into treatment.  She saw you check their ears, check their eyes, and find out what was going on.  She saw how much you cared and how hard you worked to help.  She watched you reset limbs, excise debris, and patch tears.  She saw how happy your patients were by the end of each episode.

Because of you, the girl decided to give the doctors another chance.  Perhaps not aallll of them were evil trolls, after all?  She started bringing you with her to appointments for a second opinion.  

Like a food taster of old, you would gallantly test the equipment on her behalf.  

You submitted to exams to evaluate the physician's technique.  Charlatans who failed to respect or recognize their peer were quickly dispatched. 

Because of you, the girl was properly treated, with deference and every courtesy.  Because of you, the girl's parents were assured she was given every advantage.  Peace was restored and both the girl and the parents were pleased.  

Thank you, Doc McStuffins.  

Thank you.  

On being prepared.

So my girl really IS sick after all, making us the those parents that took their little viral vector back to day care yesterday to share with others.  Though in our defense, she did.not.stop.moving Thursday while she was home "sick".  To wit:

Matt said her nose was a little runny at drop off but she was still happy & energetic.  She'd been put in daycare time out for, um, GI reasons, not snotty-nose reasons - unrelated, right?  Apparently not.  We got a call at 4:45 yesterday, as I was already in the car heading home, that she was on the floor crying inconsolably.  Nothing like being an hour away from sad-baby to bring on the mommy guilt.  By the time I got her home she just looked miserable and had a slight fever - also, oddly, her eyes were crossing more dramatically than even before her first eye surgery.  From fatigue maybe? 

For some reason, even if this turns out to be nothing, it's left me overwrought and jumpy.  Watching the news of the earthquake and flooding in Japan emphasized how very fragile and tenuous our spot on this planet is.  The earth can literally fall away from under your feet.  Or you can get a cold and land in a hospital with pneumonia (ok, it was RSV, but still...).

There was a line in Alexa Stevenson's book about Minnesota commuters driving home fretting about their job, their marriage, & their shopping lists - right before the I35 bridge collapsed underneath them.  She said that of all the things they were worried about, the bridge probably wasn't one of them.  [Unlikely I got that exactly right, I gave my copy to Mom - apologies to the author].

That line had stayed with me.  No need for Freud or Frasier here - we've had our world fall away more than once.  Brennan was kicking away one night and the next morning at the OB's office he was gone.  Less than three weeks before his due date.  Less than a week before the 'give or take two week' window bracketing that date.  When pregnant with my girl we had a negative quad-screen and not one, not two, but THREE clear ultrasounds - three clear high risk Level II ultrasounds (they were looking for other things).  Not a single soft marker to be found.  I was finally starting to relax (about the pregnancy in general; DS had already been ruled out - ha!) till the extra long fourth ultrasound when they noticed the massive gaping hole in her heart.  Surprise!  And then, most recently, 48 hours of sniffles landed her in the hospital.  So as much as I try to roll with the punches, they keep coming from darkened corners.  I expect to be caught unawares so spend my commute wondering what I haven't thought of yet.  Because if I can put it on the list of horrors considered, then fate's less likely to send that one my way.  Because fate likes to be a sneaky little b----. 

Ironically, I don't consider myself to be either anxious or superstitious.  Or crazy.  As nutty as that last paragraph makes me sound.  Hmmm... How about preemptively & proactively prepared for trauma drama? 

And just so we don't end up on a down note (ha!  Will that ever stop being funny?), here is gratuitous shot of mommy love:

Home!

Welcome Home Little Girl!

Mommy and Daddy are so thrilled you are back home with us.  We missed Healthy Baby.  Though I suppose you aren't really a baby anymore.  I still call your almost-6 year old brother Baby Boy, which he laughs at, but I tell him that you'll both always be my babies and mommies get to say that. I look forward to threatening to use it in front of his friends in high school.

You were pretty sick there for a bit, Little Miss. Not really REALLY sick, which you have been before, but sick enough to stay with the Axis of Evil nice people in yellow quarantine gowns. Mommy got a little freaked out in the head, despite the "not really REALLY" part, because it reminded her of how sick you were when you were a baby and how if anything happened to you (or your brother) then the world would just stop turning, the sun would go dark, and all the flowers and trees would turn to dust.

Don't pull any stunts like that again, 'k? 

You and your brother bring us so much joy. When mommy was younger and cavorting around the world having grand adventures I thought that folks living in the suburbs with a couple o' kids must lead the dullest lives. I had no idea. Living with you, showing you new things, and watching as you find your own new things is magic.  There is absolutely no purer moment of bliss than when you give me a hug and pat me on the back. You are so much clearer now about what you want - you had the doctors cracking up because (in calmer moments) you would pick up my hand and move it HERE MOM and then you'd pat my hand. You will also stick your elbow in my face because, mysteriously, you like it when I kiss your elbow.  You are signing all the time now, independent of my suggestions.  I wish you had a few more fine motor skills because I have feeling you have novels inside your head, waiting only for the means to express them. The dogs make you laugh and you love feeding them while you eat and throwing dropping their toys for them. You'll soon throw them far, I'm sure.

You are also so funny. You love to play peek a boo, and tag.  You are just an inch away from full tilt running but right now, when you are chasing me with your chunky toddler speed walking, I can't help but stop so you can catch me and so I can scoop you up and kiss you. You love to share and will hand me your sippy cups and sticky bits of your meal to enjoy. I always take them and say thank you. It makes you smile. Then when I hand you sippy cup back you say thank you. It sounds like "dee-dee".  I wish you said Mama but I also find it hysterical that your second word is thank you. Gotta love a polite child.  Your first word was happy.

You are also a little hellion. You regularly move the step stools around so you can access the kitchen counters. Your various therapists think this is fabulous problem solving skill but, I'll admit, the novelty has worn off a bit because the counters aren't always clear of sharp knives and breakable bits. Yes, it's mommy's job to keep the sharp knives away from you but sometimes I'd much rather play tag or snuggle than load the dishwasher. We also don't give you plates yet because when you tire of your food you hurl the plates onto floor and break them.  Come to think of it, you should be able to throw the dogs' toys farther, given the velocity those plates achieve.  If you don't outgrow this quickly, we're going to have buy plastic plates, which mommy isn't a big fan of, and which will just allow you to give more of your food to the dogs faster.  You also love to explore, just like your brother. Your therapy people want you sit down and activate noise & light things, and do puzzles, but you're much happier emptying out the drawers and cabinets. Your curiosity inspires me, even if I grumble about the messes. You are also fascinated with water.  Which is why even your brother automatically shuts the bathroom door now.  Also why we have developed a bizarre system & schedule for the dogs' water bowls because if you have access, you will immediately dump the water all over yourself and the floor. You have an uncanny radar for water. Sometimes you try to drink from the dog bowls, if we forget to move them, which makes mommy laugh, but I haven't taken any pictures of this because I don't want anyone to ever make fun of you.  Ever. 

Your fascination with water has also given mommy a little tic inside her head. Your daddy and his family have some OCD tendencies. Nothing to worry about, their houses are just really clean and every now and then daddy will get a thing about bridges, or escalators. But not so bad that we have to take the long way home.  Mommy has previously mocked this ruthlessly not fully understood Daddy but now I am worried about any water you might be drawn to, and get stuck in. Please be careful.

We love you and your brother more than the earth and sky. Thank you for being with us. 
xoxoxoxox,
Mom.

Editor's note:  The boy's off at a birthday party and the girl's napping.  Matt had to go to work.  We did spend one more night in the hospital but I was happy we did and since we probably blew our annual insurance deductible on night 2, there was no harm. I just poured myself a large glass of wine - nevermind the hour - and am off to snoggle my DVR.  I might not be around for a couple days because I have to put in 120 hours or something this coming week.  Or I might need a break. Will see how it goes. 

Points for Trying.

Still hospitalized. No O2 most of yesterday but then the girl needed some at 3:30 or so this morning. Oh, and they put a monitor in our room full time so I've been watching it, um, a lot. Startled awake a few times last night to check on it. And it was at a funny angle so there was squinting and peering to see if it said 98 or 88 with the resulting High Alert - Now Fully Awake.

Yesterday the MD said she thought she heard crackling in both lungs and her initial chest films weren't totally clear after all (whaaa?!) but showed signs of RSV (which makes sense in retrospect since it's Respiratory syncytial virus) but there is apparently no bright clear line between a RSV and pneumonia, just a question of degrees. And with the lingering fever and woefully insufficient drinking, she said we might be due for chest films Deux today (with the thought that we might be headed to Pneu). But today she's better. She woke up HARD and unhappy today, and there's been lots of nose suctioning, but the O2 is back off. So today's MD (which would make #5) said that if she made it thru nap without desatting, we can go home.

The nurse this morning said it was too bad the night nurse didn't vacuum her nose instead of turning on the O2 in the wee hours because they won't usually let them out until they can make it through a night without O2. She asked if we were itching to get home. Well yes, of course, but get home with Healthy Babe. I am no fan of hospitals - I've read too many files at work of people picking up strange things in them (which we then may or may not be liable for. The old "but for" argument) - staph, sepsis, and, well, pneumonia. It makes me a total germophobe, contorting myself and dropping things to avoid door handles and elevator buttons. 'Course it's now easily argued I do need to be more cautious elsewhere since we now have officially Caught What's Going Around and landed our butts here, but that's a different discussion. I remember I had to petition the powers that be to break my girl out of the NICU, and in my Kafkaesque world actually had the insurance company lobbying the hospital for me (since, duh, pay for food pump rental or NICU bed? What was that? A three or four -digit- difference for them?).

Also, other than absurd amount of stuff in her nose, the general symptoms are of a cold. A bad cold, with occasional (mild) fever, but a cold nonetheless. And she's much perkier today. Also? I just had more chocolate milk. So I need to be cut off.

But I don't have an O2 monitor at home. Much less O2 tank, tubing, etc. The concern now is whether she can make it through the night without needing O2.... there IS NO WAY TO KNOW IF SHE DESATS AT HOME. I mean, intellectually, I know she's not that sick, not anymore, but what happens if her O2 drops? Does it stay down and then just keep dropping? The proverbial slippery slope? Does it stay too low till the morning, causing lord-knows-what-problems in the meantime? SIDS?!?! (at 2.5 yrs?) Nonononono...I'm perfectly happy here.

Though she FINALLY fell asleep for a nap (two hours after I told the doc I was putting her down - her schedule is wonky) and she's still at 93 92 93 91 93 94

What I was originally going to post till I started rambling about germs & being discharged:

Reservoir Snot Vats
I made a comment in the course of the above discussion about liking their nose vacuum. Nurse said we can just use a bulb syringe at home. Um, no.  They are pulling GALLONS of nastiness out of the poor girl's sinuses.  Her head simply isn't that big. Where is it coming from? 

Residual Signs (of) Virulence
The snot.  The 99 degree fever. The shocking (for her) lack of appetite. My girl likes to EAT. We actually talked to an EI nutritionist because she was becoming a little, um, disproportionate. This morning it took her an hour to eat the soft center from a single piece of toast.

Results of Spousal Vagueness
Matt, the dear, has been pulling triple duty.  Stopping by here, tending to the mutts, giving our son a quick hug at his Aunt's house, then going into work since one of us has to stay employed (also, I have vacation time to burn). But I need to be more specific in the future when asking him to bring me things. 
1st run:  one clean Tshirt, running shoes. No socks, no underwear.
2nd run: underwear, no new Tshirt (shirt #2 now being festooned with snot), but sweater he must have (hopefully?) found on the floor as it's covered in dog hair.

Relearning to use Soap, Vigorously
There's a shower in the room. Nice.  But have you ever smelled hospital towels?  I cannot even begin to imagine the de-lousing those things must endure.  But they don't even smell like bleach, they smell like flea dip. For cattle. I haven't totally abstained, but we're talking bare minimum hygiene.  Looking forward to my own bathroom. 

...or, Rapunzel, Style, Victory
Along with the shower issue, there's the hair! Oh the hair!  Ironically, I just got it cut a month or so ago.  My specific request was it be too short to put in a ponytail because I am L.A.Z.Y. And if I don't have to wash & dry daily I won't. I told myself the slicked back pony is sophisticated (mwhahahaha) but, um, no.  It just looks L.A.Z.Y.  So I look super-duper-fabulous right now.  The victory?  Is my daughter's because I've been letting her play with it endlessly, because it calms her down. 

Relatives Staring Vacantly
...but it's not like anyone here cares about my hair.  The other parents look as zombified and miserable as I am.  Pediatrics floor.  Rumor has it mostly full with RSV-ers (new word!).  So I'm sure their shirts are full of snot too.  We're careful not to look at each other too closely.  [Also, there are some KIDS on this floor. Not the patients, the parents.  Dang, they start early in the midwest!]

RNs, Smashing Vixens
OK, not ALL of them. And really more the techs than the nurses.  And some are trying more than succeeding. Why are you wearing that much make up around sick people? But some? Hawt. Simple empirical hetero observation. I remember being in labor with my boy - sweaty, stinky, and big as a whale when new nurse came in - she was like a movie star. Petite with long curls down to her (teensy tiny) waist.  Which btw? Not sterile, all that loose hair. Luckily she was at end of shift or there might have been A Scene.

Edited to add:  Also, apparently, doctor #5.  Note to spouse:  When your wife is on day #3 of hospital duty, and avoiding the cattle dip towels, DO NOT dramatically sigh as Doc#5 leaves our room.  You might hurt yourself. 

Resume Sampling Vineyards
My immediate plan upon discharge?  LARGE glass of red wine. STAT!

Reliving Sad, Virtually
Daytime TV sucks.  Also, small room and I don't want to keep her up. So I've been reading the blogs (what else?), mostly Tricia, circa 2007, when her girl also had RSV and then immediately (well, immediately in a bloggy way) heart surgery, then her doggie died.  Not that any of these things are profoundly rare (I'm not minimizing, just not claiming kinship) but the timing was eerie. Also, anytime I read about dogs passing, I think about my Max.  Max's story is inexorably part of Brennan's, and how losing Brennan made my girl's extra chromosome so much less importance because... this will sound flippant - it's not... simply because she is ALIVE.  Except it does matter a little, because we're quarantined here because of the extra, probably. I'll have to tell Max's story soon. Matt wanted me to write it down when he died but I couldn't. I suppose it's silly (he's just a dog!) but Sam Simon (of the Simpson's, and later dog rescuer extraordinaire) said something like there's sometimes one dog that takes up residence in your heart and it's irrevocable.  That's not a quote.  It wasn't in the CBS interview summary & the video isn't on line.  Too bad. It was a good line, even though I have on the vaguest memory of it. Just think Lassie. 

Also, because of Brennan, and the heart surgery, and the NICU, hospitals are such swirling emotional cauldrons (can I re-use 'vats'?).  I suppose they are for everyone. Most people both arrive and leave this world in them.  (flipping to flippant...)  Because of this, I think they need nicer towels.

Random Stories (from) Viral central

• I do not think of my daughter as medically fragile.  Still, rattling off her health history does take a solid minute.
• Neither one of my kids have had a snuggly or teddy, despite my best efforts (we have HUGE collection of rejected contenders).  No paci's either. [Though at the ripe old age of 5, my son is now into his Pillow Pets, and then there was Classy Bear - though I think those are more social things than comfort items.]  Nonetheless, my girl has spent the last two days clutching her hospital-issued sippy cup like a ...well, like a cherished teddy. She isn't using it enough, though we've staved off the IV so far, but she cries if we reach for it. I'm thinking I'll glue some yarn up top, draw a face, and call it Dolly.
• She also cries now at the SIGHT of our fine medical peeps. She knows they are up to NO GOOD.  Learning delays?  Hogwash. She identified them as the fourth spoke on the Axis of Evil almost immediately. She's in the dangerous grey zone between well child visits where she ends up hugging her regular ped (it's a long hair thing), or a cardio check up where it's long & we need distractions but is not particularly intrusive, and being too sick and weak to fight back. 
• So fight back she does.  Other than her breathing, I brought her in because she was SO lethargic, wouldn't-sit-up soggy-wet-noodle lethargic.  By the the time the ER agreed she needed O2, she became demon spawn.  Super-powered demon spawn.  She ripped TWO nose cannulas off (including the adhesive patches on her cheeks - Man that must've hurt), and became simply WILD if the cutesy dinosaur mask came within a foot of her.  The nurse was on break so the ER doc stuck the O2 tube in the end of a styrofoam cup and told me to aim it at her face.  Which I tried to do but my daughter, the math whiz, knew exactly how far away a foot was and freaked out if it breached the line. 
• On the one hand I really appreciate the problem solving skills.  On the other hand is my girl  really the first kid to have a fit about this?  The styrofoam cup is the first alternative? 
• The ER doc was great - she sat down and we chatted about pneumonia in kids with DS, pneumonia vs RSV, blah, blah...   But when the initially friendly ER nurse came back from break and was helping us pack up for the big move upstairs, having missed my demon spawn's antics, she snapped at me about not trying hard enough and how my daughter was going to end up in an oxygen tent.  It was not said gently.  It was said in that voice I assumed they reserve for crack-whore-moms (sorry gigi) who try to see their kids after social services has removed them because crack-whore-mom gave the kids too much Jack D at naptime.  At the time I was laying down on the gurney next to the girl holding the styrafoam cup 13" away, ready to be wheeled down the hall. Not prime fighting stance. I said something like what do you think I've been doing?  I did not go toxic on her, which is what I've been longing for another chance to do ever since. Matt is relieved I didn't.  I am terribly disappointed in myself.  The customer satisfaction survey I will be sure to fill out just doesn't have the same punch.
• Upstairs, after experimenting with the cannula and the girl's foot wide defensive perimeter they simply strapped her arms into those restraints which was sad, but effective. (Oh! That's what they do!  The ER and peds floor need to talk more)  They also said, when I asked, because it did seem easier, that they don't use oxygen tents anymore because apparently there was an incident in Canada.  Which I have zero intent of googling. Which shows how much the snotty ER nurse knows.
• Before we resorted to arm restraints, there was a very Very VERY traumatic incident involving me, sitting with my child in a bear hug, while they tried to simply force the mask onto her face.  Under the theory of "They eventually give up".  She thought we were trying to smother her.  No, I mean really.  She was in a full fledged panic.  - I - felt like we were trying to smother her.  I was crying, my girl was sobbing.  It was not our finest hour.
• The arm restraints came off the next morning.  She has more or less conceded the cannula.
• Before we realized the face mask was not an option, there was a discussion amongst the ER staff about whether my daughter was a mouth breather. It was done in rather clinical terms. Point being if she isn't breathing through her nose (especially if, say, it's full of snot because she has RSV), then the nose cannula simply won't be effective.  IT.SET.MY.TEETH.ON.EDGE. Surely there is a long latin or greek term they can whip out instead of "mouth breather"? 
• Overheard:  some other nurse talking about a "Down's kid" in the PICU.  Ironically, this did NOT bother me. I find the linguistics & semantics of this all fascinating. Yes, people first language... but other's have pointed out that people say "autistic kid" or "deaf kid" or "tall kid" and it's just an adjective. I suppose, as with most things, it's a question of tone, context, and intent.
• Food:  I wish I were one of those people that dropped pounds under stress. Um, no.  Dudes, they have an ICEE machine TWENTY feet from me!  Also, a fridge stocked with chocolate pudding, chocolate milk, and popsicles. On the list of (food) things I'm grateful to the Universe for, right after wine and coffee, chocolate milk and popcorn are tied for third. Icees are #5.
• The Peds Floor:  My son has never been hospitalized.  My daughter spent a month-ish in the NICU and then a week in the PICU after her heart surgery.  Her eye surgery was out patient so they just handed her back over.  Interestingly enough, you don't get quite as much attention on the regular floor.  Not complaining because we don't really need it but nonetheless a little disorienting- they come in, check her oxygen levels, suction her nose (more trauma), listen to her heart/lungs (even more trauma - my girl has developed a paticular loathing for stethoscopes. Wierd. I would've picked the nose vacuum)...and then they leave us alone to nap (why do you think this post is so long?) and raid the fridge.  There is no monitor bank, no alarms, no roommates (the up side of contagions!). 
• In the ER I kept hitting the O2 alarm's silencers. Someone gave me a look & I said I was a nicu mom.  Oh - ok!  Like I've put in the time & now have the right to silence an alarm on a monitor that 6 people are staring at anyway? 
• Final thought on the b**** in the ER.  As noted, while not medically fragile, my girl & I have spent a few hours here & there hanging with the RNs, MDs, CNAs, PAs, etc. While in more emotionally fragile states. I've had a couple of bizarre conversations, some I'd want to grab a beer with, some not, but I've always aimed for 'professionally friendly'.  Not pretending to be besties, but calm, you-can-give-it-to-me-straight-doc, and able to convince the NICU that I can handle a newborn with a feeding tube. I have never had any "Incidents".  For that person to suggest I wasn't trying hard enough is infuriating.