[tri-med] Re: Devon update

Well Penny I know what your going through.  Cody has been home from school
since Tuesday and the couch or big chair are his new home.  I feel so bad
for him, he is usually very active and to watch him just lay or sleep all
day I'd rather have active back.  This bug is a nasty one I had it also for
about four days.  Hopefully today he'll start picking up.  Hope things are
getting better with Devon...and Joe as well.  You've been in our prayers.

Tracy mom to Cody (Trisomy 9p)


----- Original Message ----- 
From: "Penny Victor" <pvictor@xxxxxxxxxxxx>
To: <tri-family@xxxxxxxxxxxxx>
Cc: <tri-med@xxxxxxxxxxxxx>
Sent: Tuesday, April 27, 2004 1:33 PM
Subject: [tri-med] Devon update


> Hello All...
> Today it's a little easier to sit here and type an update. Yesterday
dawned with Devon laying in bed having gotten sick in bed (he got sick Sun
night too)...he just laid there and let me move him around like a puppet
:o( Usually as soon as the gate is removed he's off and running but he never
even moved his head while I went and gathered what I needed to clean him and
his bed up :o( The one saving grace was that his pullup was wet...the ONLY
thing that kept me from taking to the ER. His temp was again near 103 and he
still wouldn't drink...nothing since 10-11 the night before and only like 6
oz total the whole weekend...his nose and lips were so parched...even his
tongue was dry...I've never seen a dry tongue.
> I got him packed up and dressed to go to the doctors at 9AM...Dr Bell said
to be there when they opened if we made it without going to the ER. Waiting
room was full :o( At least 2 walkins in front of us besides all the ones
with appointments. One mom sitting there holding and rocking her toddler...I
wanted so much to be able to do the same thing...but Devon just seemed to
hurt all over and just mewed like a kitten...broke my heart. I was surprised
when they called Devon before all the other walkins...Dr Bell's doing I'm
sure (we like that man!) The nurse came in and ask me what was going on and
I told her...my worry must have been evident on my face because she said,
"and how are YOU?" I told her I'd never seen him like this...he's been so
sick...hasn't even gotten off the couch or bed hardly at all since Saturday
unless someone carried him...just slept and occasionally opened his eyes to
slits to be sure someone was with him. I told her I was scared and she came
over and gav
>  e me a hug and told me he was in the right place and he'd be ok...and she
brought me kleenex :o) when Dr Bell came in Devon was just sitting in his
stroller...arms dangling, eyes closed...didn't even flinch when the doctor
said hello to him and fuzzed his hair :o( I think that really floored him
too...Devon ususally meets him at the door and tries to steal his cell
phone, pull him by the hand over to the sink...maybe pull on his tie. But
boy he came right alert when he tried to look in his ears...they hurt so
bad...his ears are both infected...I expected that...but still it was the
dehydration that had/has me the most worried and the doctor too. He ordered
a STAT lab work to be done to see just how dehydrated he was. He wanted me
to take him tothe hospital for it...not FL Health Care HMO Lab Corp because
their idea of STAT and his differ greatly. He wanted the results fast.
Soooo...I took him to the hospital and took a number...waited...got called
in to do the paperwork...an
>  d promptly told that FL Health Care won't allow anyone but their own Lab
Corp to do their clients labs...even a STAT order. Dr Bell's thinking was
that if he put a STAT order in the hospital could do it and FHCP should
still pay for it....NOT!!! See what I mean about HMO's???? Doesn't matter
how sick someone is...AND Dr Bell would have had the results by noon with
the hospital...instead we didn't have the results until 5 PM!!!!! He could
have been in shock by then! GRRRRRRRRRRRRRRR
> Anyway...I had to haul Devon...sick as he was...back into the car...down
the road to Lab Corp...unload him AGAIN...and take him in to wait somemore
:o(  Then we get in there and the girl started to get him ready to take his
blood and he started to dry heave. The girl dove behind him and hid her
head...me and the big burly guy holding Devon looked at each other like
???????
> The guy says "you mean to tell me?????" and trailed off...I spoke up and
said she doesn't mind blood bt she can't handle a kid vomiting" She spoke up
and said "that's why I don't have kids". The guy was laughing at her because
of her chosen vocation and her being squeamish with kids vomiting...and she
then says that she's a trauma nurse :o) The guy says, "lemme get this
straight...you're a trauma nurse and a lab tech...you see blood and guts all
the time and you can't even look while a child is having dry heaves????".
Finally...Devon stopped...had nothing to throw up...then of course they
couldn't get blood the first stick ;o( Partly because of his being
dehydrated...and partly because everytime Devon flinched from them rooting
around with that needle his vein would roll away :o( They had to get his
other arm...and did ultimately end up getting blood. next we had to walk
down to FHCP and pick up his RX for suppositories for vomiting...and FINALLY
we got to go home where Devo
>  n promptly collapsed and slept after I gave him his new medicine and some
motrin and laid down with him. Then we waited and waited and waited :o( Joe
came in at one point after getting his head and shoulder pain under control
for a little bit and as soon as Devon saw his daddy he pushed himself up off
the couch and picked up Bear to kiss him and then brought him to Joe and
crawled up between us and layed his head on daddy's shoulder and fell
asleep. After a little while he decide he wanted to lay down...so he kicked
me off the couch first and then Joe...and Joe put on his neck and head
suppport and sat in the corner of the floor and the LSeat and Devon held
onto his arm to be sure he stayed with him :o) Most kids want their mommy
when they're sick...he wanted me in the room and he sits next to me all the
time...but when he was sick..he wanted his daddy ;o) It was so special and
sweet :o) Just another example of how things are different for
everybody...doesn't mean they're ba
>  d.....or worse...just different...our situation just happens to call for
a different norm ;o)
> FINALLY...the doctor calls...5ish!!!!!! His BUN and creatnine were
high/elevated...but not dangerously so...same with his white cell
count...but all the other things that they look for were normal....GREAT
NEWS...except for the fact it meant we have to just ride this out and keep
his temp from getting so high that he won't drink and keep the suppositories
going so he won't throw up...and drops in his ears...getting him rehydrated
is most important...and he is dehydrated...just not dangerously so...yet.
> He's a little better today...showing some interest in the TV...but just
laying around still...and napping alot. He's taking more liquids today and I
got him to take about 4 bites of banana and a few bites of strawberry banana
applesauce...still a low grade temp. I've been home with him (I called my
boss Sunday and told him what was going on)...hopefully go back to work
tomorrow or the next day...depends on Devon and Joe. Thanks for all the
chicken soup thoughts and prayers...keepem coming :o)
> Love,
> Penny...loving and devoted wife to Joe, the best husband in the
world...mom to Nick (13 yrs old...lover of Yu Gi Oh, RollerCoasters,
Chocolate Icecream with Ovaltine sprinkles), Devon (8 1/2 yrs...lover of
Barney, Blue, Bear in the Big Blue House, Elmo, Stuart Little, and food in
general...Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 6 or 7 year old male yellow lab adopted from FL Lab
Rescue 12/13/02 :o)
> Web Pages to come soon...
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

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

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