[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 gave 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...and 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 Devon 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 bad.....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

Other related posts: