[tri-med] Devon Update

Hello Everyone.
It's been an exceedingly loooooonnnnnggggg day! Last night I had planned on
waiting until this morning. His O2 sats usually run 99-100.so 96-97 isn't a
bad thing except that it is lower than normal. And I KNOW Devon's
pediatrician draws the line at 94. However.I took Devon's temp again and he
had a low grade temp of 100.1. Again.normally we don't even treat a temp
that low.BUT when it was coupled with the timing of choking and the wet
cough starting immediately afterwards.I was just very worried and I KNEW I
wouldn't get any sleep until he had a chest xray. And aspiration pneumonia
or not SOMETHING was going on. I took him to the ER at about 8:30.just in
time for the power to go off and the fire alarm to go off.it did that 3 more
times in 30 minutes.including when we were in triage and the nurse was
taking our information.she lost everything once and had to start over :o( We
were taken back to the same room we were in when he had rota virus. I
started his dvd player and he was satisfied. Nurse comes in.he tried to kick
the snot out of her despite my warning to stay away from his feet (he was
NOT happy to be there and he planned to make everyone pay!). More history
taken.by this time he's eating cookies and wants milk and is mad because I
won't give him milk :O( Battery dies in dvd player.no problem.change to the
back up battery. Problem.back up battery soon dies too :o( Now he's PU'D!!!
Meanwhile.unsuspecting young man comes to take us to xray. We get into xray
and I'm dreading it because Devon HATES getting chest xrays!!! 2 pretty
young women come in to take cute little Devon's xray :o) MIRACULOUS change
in his demeanor.all of a sudden he turned into this smiling cherubic little
charmer.amazing what he'll do for pretty girls :o) We get 2 shots NO
PROBLEM!!! WooHoo!!!! Pretty blonde gives Devon 3 stickers and insists she
wants to take us back to his room and tells young man he doesn't need to :o)
Devon scores :o) I settled into reading my book and Devon dozed. Nurse comes
in to TRY to get his vitals.HAH!!! Then another one comes in and gives to 2
scripts and begins giving me directions. I asked questions.nurse leaves to
ask doctor.I read chart/top paper. GOOD NEWS! He does not have aspiration
pneumonia!!!! Bad news.he does have bronchitis :o( Doctor comes in..I ask if
the choking started everything.just needing to hear that it didn't.he says
NO.it didn't. I asked about drug interactions.he does no inspire confidence
:o( I was instructed to give him his first dose of azithromycin last
night.so we experienced our first drive thru pharmacy.very convenient
although we had to kill 20 minutes. I used my time to get a Diet Coke at
McD's and call Joe and let him know we'll be home soon :o) We got home a
little after 11 pm.gave Devon his medicine...and then was amazed to see him
get silly and very happy arranging us on the couch :O) I'd have given
anything for him to get silly earlier!!! Finally got him to bed around
midnight. I fell into bed expecting to pass out right away but it didn't
happen.I was too tired :o( This morning Nick comes in after his shower and
tells me I forgot to zip the end of Devon's bed when I tucked in the
comforter and Devon got out of bed and met him in the living room!!! I have
NEVER done that before :o( Joe was home with him today and he's acting much
better today :o) Although Joe's having a lot of head pain lately.so it
wasn't fun for him today. He'll be home again tomorrow and we'll see after
that. He's requesting his bath presently.actually

he's DEMANDING his bath.so must go :o( Have a feeling I'll be crashing very
soon.my butt is dragging :o(

Thanks everyone for your concerns and comments :o)

 

Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me
on our trisomy listserv at:

http://www.trisomyonline.org/victor.html      

AND...Devon's moment of glory in Exceptional Parent Magazine...

http://www.eparent.com/familiarfaces/ffaces_4_01.htm

AND...see our Trooper on FL Lab Rescue's website at:

http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm

AND http://web.coehs.siu.edu/Grants/TRIS/

"Those who matter don't judge me .... those who judge me don't matter."

 



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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