Friday, February 11, 2011

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

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