Tuesday, March 21, 2006

now i lay me down to sleep

two words
sleep study

ever done one of these?
we are adding it to the growing list of test and procedures performed on my 7 year old daughter.
so we can say we did, let's review...

jaundiced at one week old - to the hospital three times for blood tests.

skull x-rays at 10 months - hairline fracture

first set of tubes and adnoidectomy at 2 years.
did i forget to mention that she stopped breathing when the extabated her and had to be reintubated??? visual - FREAKED OUT FIRST TIME MOTHER levitating in waiting room chair when dr explains this little experience. me looking at him -barely breathing - in a whisper "ARE YOU TELLING ME - in front of all these people - THAT MY TWO YEAR DAUGHTER JUST STOPPED BREATHING IN THE NEXT ROOM??!!!"

"yes, mam. apparently she has reactive airway disease. would you like to see her now?"
i was already in recovery when he hit the second 'mam.'

second set of tubes and tonsillectomy at 3 years.

scottish rite hospital exam and diagnosis of benign hypermobility joint syndrome at 3 1/2 years. in plain english, she's double jointed - so much so she can almost touch her toes to her belt buckle which in turn caused her pain every day at bedtime...

THIRD set of tubes at 4 years.

diagnosed chronic sinusitis at 4 1/2 years. ENT wanted to place a broviac catheter for antibiotic delivery. that's a direct line into the main artery of the heart (or something like that). it stays in place for a month. can you say
this is the same child that ripped her IV out in less than 10 minutes when i left her with her father in her hospital room (tubes and tonsillectomy). I ran to get a quick bite and when i returned it looked like someone had sacrificed a goat in her hospital room. so no, i don't think we are going to put a direct line into her heart. call me crazy. sometimes you just go with your gut...

so instead, we paid an astronomical amount for an antibiotic compounded with adhesant for her nebulizer which my insurance company deemed as experimental. what does that mean - yep, you guessed it, OUT OF POCKET EXPEN$E. they were going to pay three times as much for the broviac procedure but balked at non-invasive antibiotic treatment. splain that to me...

so that worked. for about 8 months.

then it was off to the OR to have tiny parts of her sinus tissue removed. there's a big long fancy-smancy name for the procedure. i can even spell it. i will spare you. the procedure was a snap. post op was the absolute worst experience of my life - and prolly hers.
take a deep breath and relax your body before reading this => we had to use a water pic with a nasal attachment and warm saline water and irrigate her sinuses twice a day. it took three grown adults to accomplish this. two to hold her, one to irrigate. yes, i am saying we held her down and SPRAYED warm saline water up her nose with a water pic after it had been operated on. i called her dr. no less than 10 times asking if there was some other way to accomplish this. she said no every time. we endured.

then may of 2005. on my way to the airport. business trip to orlando. departing three days early for a few days of R&R at cocoa beach. cell phone rings. hubby. Admitting daughter to hospital with inflamed airways. turn car around. do not pass go. do not collect suntan and tropical fruity drinks by pool. (i love my daughter deeply and am ashamed to admit it - but i am still a little pissy about this one.)

in between the aforementioned tests hospitalizations and surgical procedures, there have been countless speech evaluations, hearing tests, ER visits, allergy shots and she is currently enrolled in our 5th specialized speech program.

my pediatrician and i are on a first name basis. i have her home phone number. she has my cell number memorized. and if you need a referral in dallas - let me know. there is no better pediatrician on the planet. bar none.

so anyway, in comparison, a sleep study sounds pretty tame compared to what Sam has already endured. and let me be very clear - she has endured and conquered. she is a first class trooper. brave and strong. i admire the hell out of her.

and the sleep study was, pretty easy. for her. 'cept for the fact that she had to sleep with more wires hooked up to her than my tv/vcr/dvd player/home theater - it was a cake walk.

why did we do a sleep study you ask. here's the long and short of it. sam has never slept well. won't go to sleep. won't stay asleep. wakes too early. flails, kicks, cries, nightmares, talks, yells - throughout the night. on the few rare occasions i have tried to let her sleep in bed with me, i have had to erect a barrier - akin to the great wall of china - between her and me so as to not wake up black and blue. and even that seldom prevents her from still beating the crap out of me.

last year, she was diagnosed with ADHD. sleep problems go with ADHD. we tried a very low dose ADHD med with almost no effect on her. so instead of going to the next level of meds, her dr. pointed out a child with sleep problems can exhibit ADHD symptoms. hmmmmm. well that's interesting.

so he suggested we go back to square one and rule out sleep problems - that could be causing the adhd behaviors. i'm willing to do just about anything to avoid adhd meds - when possible. so we were off to the sleep lab

get all that? good. 'cause i have had little to no sleep and do not have the wherewithal to splain it again.

it was pretty cool - the sleep technician (that's actually what they call them) hooks up all these wires. elastic velcro bands around her chest and tummy to measure breathing. oxygen thingie under nose. stickers and probes in her hair, on her face, chest and legs. (don'tcha think it's cool how i use all the proper terminology?) then he wrapped up her entire head in gauze so she couldn't rip it out while sleeping - as i was certain she was going to do.

they had a microphone hanging down over her bed and an infrared camera to videotape her.

i got the recliner that folds out to a makeshift sleep-on-a-crack-break-your-mother's-back twin bed substitute.

we (she) finally got to sleep around 9PM - and of course - unlike at home, she goes right to sleep in less than 15 minutes. little smartypants.

and of course, she wakes up at midnight to go to the bathroom. unlike at home - where the pull-up works just fine. little show off.

Me - i lie there and fear that i am going to snore. and it will be recorded.

or i am going to talk in my sleep. and it is going to be recorded.

or, heaven forbid - i pass gas (we ate broccoli and cabbage the night before - stupid t_cole. really stupid) and it will be recorded.

i finally fall asleep. and for the record - i don't know if i snored, talked in my sleep or passed gas as i was too afraid to ask the technician this morning...

so at three am, she is doing that flailing thing she does. talking, slinging arms. so the tech comes in to check on her. he tells me "We've got enough data now if you'd like to leave."

do what?!

me, "i don't think so." [dripping with shock and sarcasm]

is he mad? he wants me to get up at three am and drive an hour to get home. i must be dreaming. as i said out loud - i don't think so...

so let me tell you - at 5:00 AM ON THE DOT, he was in there unplugging my daughter. the paperwork said the study would be completed by 7 - 8 AM. we were out the door at 5:23 AM. no joke. as I was buckling my seat belt, i saw our sleep technician entering the garage to go home.

ahhhhhhh. now i get it. if we leave at three am - HE can go home early.

am i going to tattle? you bet. does it matter we were shorted 2 - 3 hours of data? i don't know. yet. but i can tell you this, my daughter has been through too much in her brief seven years to get the short end of anyone's stick.

allow me to introduce you to the mother bear in me. don't mess with my cubs.


Anonymous said...

t, you're a great mother bear! i know you're glad that's over. i'm proud of sam! She is sooo courageous! and you are too for that matter. that's awesome. I hope the data gives you the diagnosis you need so your precious angel can have a peaceful sleep. love you both!


btw - love the jpegs =O)

Reg said...

Poor Sam! and for that matter, Poor t-cole! I hope this study sheds some light on Sam's issues. I bet that they're all tied to one, all-important thing and if you are persistent enough, you'll find it an dall the other problems will fall away. Just a hunch, but I'm willing to bet...

t_cole said...

thanks reg. and i have to agree with you.
it's been really hard trying to figure out that one thing...
with such a profound speech delay - and communication being an issue - we have had to treat as eash issue is diagnosed.
but i have always said that there is something else - something we haven't hit on yet.
let me know if you have any ideas as i do value your input and opinion.

and sjc - sam and i love you too!

buddha_girl said...

You kid has likely been cosmically linked to my niece, Loud Girl. (Check out Lil Sis' bloggy.) She was diagnosed with cancer at 22 months...a cancer that CAN be diagnosed upon BIRTH yet the insurance companies say testing ALL newborns would be too costly. Fuck off insurance assholes.

Anyway...Loud Girl is courageous and triumphant on all counts! I know Sam is as well!

If you want me to kick the sleep tech in the left shin, gimme a call. We call people like him "shmucks."

bg's Little Sis said...

Hey T,

I'm with you on this one, bring on the momma bear, she works miracles, if we are not our children's medical advocates who will be?!?! Keep on it, you'll find it. My loud girl is still doing speech and a few other spec.ed programs, all are helping, you've just got to stay on it. For the record, her ADD meds really have made a tremendous difference, we can go with the lower dosage with close monitoring of her foods, love organic baby LOVE IT. Sleep has improved since we started school for her, I'll hope the same for you and Sam. Feeling your pain and your triumph!

All the best,

Catizhere said...

Oh Sam, How adorable you look in your electrodes!!

I hope the study gives you some reasonable explainations and/or suggestions so that the 2 of you can get some sleep.


KC said...

t_cole, I hope this sleep test thing works out by giving you an answer that makes sense for all of you and helps everyone in the family sleep better at night.

I'm sending positive thoughts your way!

Big Pissy said...

cole: I hope this test sheds some light on Sam's problem sleeping....
Bless her heart, she's been through so much!

Have you turned that jerk of a technician in yet?!?!?

cadbury_vw said...

if you reach under his ribcage you can rip out his heart and lungs at the same time

just my thought for the day

t_cole said...

hey BG - appreciate the offer of physical violence. i knew i liked you!
and lil sis - i wouldn't mind using the meds for adhd. i know there are some good ones and will gladly use them if the diagnosis of adhd is confirmed. i just want to make certain (as certain as you can be with these things) that we know what we are dealing with.
thanks for the encouragement - means a lot from someone that's been there!
thanks Cat. Took two naps. yesterday and today.

KC - thanks for the goodness you sent. i knew i felt something raining down on us! =)

and Pissy - i have not tattled yet. i found - though years of experience - it is best i cool down and think these things through before acting. otherwise i sound like a stark raving lunatic (ask me how i know...)

cadbury, thanks for the tip on how to cause serious physical injury to someone...
ummm, remind me not to piss you off.
but i do like that about you - a blood a guts kinda guy!

E said...

Wow. Your and your daughter's strength astound me. What a tough kid you have! And I want to know how you cope because I can barely handle dog surgery!
Take care of yourself and Sam and if you need back-up for some ass-kicking I am here for you!