[tri-med] Devon Update

Good Morning Everyone :o) {{{{{never ending yawn}}}}}
Well.we made it and it's now the day after Devon's eye surgery :o) Although
by the end of the day yesterday, I was beginning to wonder if we were stuck
on that day?? Remember.my updates and Victor family chronicles serve as my
journal entries, so they're detailed (read long) :o) So if you don't like to
read just know we all made it through the day and Devon is doing well :o)
For the rest of you who like to read my stories.read on :o)

 

Yesterday dawned for us at 5AM {{{{another yawn please}}}} :o) Made sure
Nick was up and getting in the shower when we left the house at 5:45. The
dome light in our car is burned out and haven't found the correct
replacement bulb yet, so Joe very thoughtfully brought one of our big
Maglite flashlights and positioned it on the console so that I could see to
hook up all the hooks on Devon's car harness. As I was thinking what a good
idea that was, Devon reached forward and grabbed the flashlight and put it
right up to his eyeball giggling his head off (he really cracks himself up
at the oddest times). So I took the flashlight down from his face so I could
see the D-rings and went to lean over him at which time Devon started to
bring the flashlight back up to his eye. Our timing was perfect :o) He just
about brained me with the flashlight.smacked me right on my right brow bone
and cheek bone and may I say."MAN DID THAT SMART!!!!" :o( Devon may have
learned a new word???

 

Anyhoooo.off we went to Arnold Palmer in Orlando. We made it in pretty good
time and got there right at about 7 AM. The hospital said to get there at
7:30 but Mike (the surgery scheduler) said to get there at 7 because the
baby that was being done before Devon would only take like a half hour, so
he thought we may get in ahead of schedule. The waiting room was empty when
we got there but not for long. We got called back within like 15 minutes. We
were taken to our own little glass room and the nurse came in and told us
how things would be proceeding. She said that the anesthesiologist would be
in shortly to talk to us and it wasn't Dr. Christian so that worried us a
little but we reserved judgement until we met her. She also told us we would
be helping with the IV which worried us too. BUT.through this whole time Joe
was playing with Devon to distract him from his hunger and thirst and they
were watching/listening to Blue's Clues on Devon's DVD player and Joe was
telling Devon what was happening on the screen. Devon remained happy and
smiling which was a HUGE improvement over the past couple of surgeries. 

 

Pretty soon our nurse came in with 3 kinds of eye drops and she was fretting
about if she'd/we'd be able to get them in his eye (apparently Dr. Auerbach
had voiced his concern about that). Joe and I looked at each other like,
"PSHAW!...no sweat we do that everyday!". SO I told her if she wanted I'd
put them in and she jumped at it :o) I think she thought it would be really
hard.but we soon proved that theory wrong :o) She kept cheering us on and
telling us what a great job we were doing like we were doing something
really hard like building a reactor or something.still it felt good to get a
pat on the back even if it was overkill :o) Meanwhile after I got the first
set of 3 drops in the other 2 drops arrived from the pharmacy. So every 10
minutes for 3 times he got 5 different drops. She also gave me a marker to
print "YES" next to his left eye. Long about then he started to lose his
sense of humor a little but each time Joe was able to distract him. Joe and
I started looking at each other and saying, "OK.NOW would be a good time to
bring the Versed nose drops". The anesthesiologist cam in during the eye
drops and talked to us and she was very nice and assured that she now knew
as much about Devon as Dr. Christian did. She also reinforced that we
wouldn't need to help with the IV. I started to object but then she said
that there was no need to put us all through the trauma that would involve.
She said that once he relaxed with the Versed (IF it worked and even if it
didn't), then they would take him back to the operating room and use a mask
and give him just enough gas to put him out the rest of the way at which
time they would get his IV in and intubate him. This made us IMMENSELY happy
to hear. What we want to know is, "HOW COME NO ONE ELSE EVER DID THIS FOR
ALL HIS OTHER SURGERIES???". Meanwhile, everyone kept commenting about how
happy he was and how good he was being :o) Joe and I were rather proud of
him too and told him so over and over again :o) Shortly before the nurse
with the Versed arrived Devon got tired of Blue's Clues and we had to switch
to his iPod shuffle and headphones. I spent that last 4 nights figuring out
how to download some heavy metal/hard rock onto it. I felt like I'd given
birth when I accomplished getting 16 songs on the blasted thing! And best of
all I managed to find downloads for 2 of his most favorite songs.The
Lumberjack by Jackyl (it features a guy "playing" a chainsaw instead of a
guitar).Devon LOVES it!!! And then the ever popular "thrash rock" version of
The Three Little Pigs by Green Jelly :o) You haven't lived until you've
heard Green Jelly lead "singer" SCREAM "LITTLE PIG LITTLE PIG, LET ME IN.NOT
BY THE HAIR OF MY CHINNY CHIN CHIN!!!!"  :o) 

 

FINALLY, the nurse arrived with his gown and the syringe with the Versed
drops in it. So we got him dressed in his gown and I double diapered him so
his diaper wouldn't leak during surgery. And the nurse quickly squirted the
drops up his nostrils with us holding him. Much to our surprise and
pleasure.Devon started drooping (letting his arm dangle loosely and his chin
rest on his chest with his eyes still open). It was really funny though
because the nurse quickly started trying to get his vitals thinking he was
going to cooperate (smirk). And she WAS able to get his BP which was a
little high at 135 over 85 (not unusual before surgery she said). BUT.when
she went to tape the pulse ox sensor on his finger.NOT! So she then switched
it to his big toe (listen for the cartoon dog Mutley wheezing his laughter
at this point). And she hooked up all the leads for his heart monitor and
other goodies and surprisingly enough, he left them alone. We were all
laughing and shaking our heads because even when his arm would dangle
loosely at his side and his head would drop.he still kept flexing his legs
and toes and feet which made his O2 sats read in the low 70's to 80's which
she knew (but I assured her anyway) that he didn't ever sat that low. Of
course as soon as she left the room for about 2 minutes I watched his foot
stay completely still for like 45 seconds.long enough to get an accurate sat
reading of 100% :o) Not only was she very happy and surprised that he satted
at 100% even though he has asthma.but she was laughing at his obvious ploy
to wait til she left the room to keep his foot still :o) Through it all we
could gradually see that one by one, every time one of the nurses, or
doctors would come in to check progress they not only saw that he was doing
really well, but they all started commenting on how happy and great he was
doing and how he was keeping amused with different activities. It surprised
them a little I think to see his sense of humor emerge too :o)

 

At about 9:15 they started to take him to surgery (15 minutes earlier than
scheduled). They asked if there was anything that we could send with him to
make him happy and relaxed as they took him and got him ready. So we put his
head phones back on and clipped his shuffle to his gown and handed him his
plastic block to worry. They wheeled him away with 2 or 3 people on both
sides of his gurney with him sitting up listening to the Scorpions and
worrying his block.very content ;o) 

 

NEVER fails.just when I think I've got it all under control.after all this
IS his 5th or 6th procedure/surgery.I start crying like a baby when they
take him away from us :o( Comes out of nowhere and I don't seem to be able
to stop myself :o( So Joe and the nurse stood there hugging me telling me
he's be fine and that he was in good hands.

 

We went out to the waiting room which was full by this time. Took a little
while for Joe to get me calm again and then I hugged Devon's Bear and
breathed deeply so I could smell him and tried to read the book I brought.
Finally I decided that was useless and went down to get a croissant  since I
hadn't eaten yet and I had a headache. A while after I came back and sat
down, Joe decided to take a walk. I just KNEW they'd come out while Joe was
gone even though it hadn't been quite and hour and a half yet. Dr. Auerbach
came out smiling (always a good sign). When he came in to introduce himself
with Dr. Blumenfeld when Devon was getting "in the zone" after his nasal
drops, I asked if the Alcon rep was there and he was. I expressed my concern
that he wouldn't have the right lens because Devon's eye is so funky and
small and he said he was almost certain he'd have it because he had such a
wide variety of lens out in his truck ;o) That made me feel a little better
:o) Anyway.the doctor came out smiling and told me that everything went
really well and Devon did fine :o) And then not a minute later the lady came
over to take me back to recovery. Joe wasn't back yet but only one person
was allowed back at first anyways. I got to recovery about 2 minutes before
Devon did. That meant they actually listened to me when I told them how it
would be when he woke up :o) It's always a little scary and disconcerting
when they wheel him in and he's laying there so completely still under
blankets with a bare chest, wire leads, IV cath still in and the 3 or 4 inch
curved hollow tube still in his mouth and throat to keep his airway open
(complete with a nurse holding an ambu bag with an O2 mask giving him
oxygen). He was still deeply asleep for quite some time and they said to let
him wake up on his own. At one point just before they brought Joe back he
started choking and she popped out the tube. But still he was choking and
couldn't seem to get a breath in. Again.a little scary but she turned him on
his side and suctioned his upper airway crud that increased while under
anesthesia. He never opened his eyes during the whole thing and then when he
could breath again, he settled right back to being asleep and unmoving. I
think the nurse was lulled into a false sense of security at this point
because he slept for like an hour and a half and she started rubbing on him
trying to stimulate his awake. And just as I predicted and told them
all.within like 10 seconds of his awakening, he went from zero to ballistic.
He was kicking and flailing his arms with super human strength trying to rip
off and out all the attachments. His nurse was flying around like a wild
woman while Joe and I were trying to restrain him and keep him from tearing
his patch off snd his IV cath out. She managed to get some things off while
Devon ripped others off. When she tried to uncap the IV cath and she
uncapped it.it was like someone turned an a faucet of blood :o( Mind you the
whole while we would have sworn he'd sprouted like 6 extra arms and legs.
She got the cath out and had Joe holding one of the while blankets over it
to stem the flow while she flew out of the room to get a bandaid and gauze
pads. She somehow managed to get that on and then I had to go solo while Joe
ran over to get his boxing /bag gloves and clothes. Have you ever tried to
dress a Tazmanian Devil while it's spinning a bucking like an animal
possessed??? This is NOT an easy task. And by the time we maneuvered him
into his stroller Joe and I were both wiped out :o(  I think his nurse was
still trying to recover from the whole thing and I think she was pretty
relieved when we hauled butt out of there as soon as we could! Devon
complained loudly and kicked and flailed all the way to the car but as soon
as we got him hooked into the car and I squished up next to him and buckled
myself in.he just laid his head on my shoulder, gave a small smile and a
heavy sigh and went to sleep :o) PHEW! Thank heavens because I was a wreck
by that time and so was Joe :o( 

 

The other thing was that when the doctor came in he told us we'd need to
take him to his office in Winter Park at 4 pm. This elicited a look between
me and Joe and a groan or 2 :o( First of all we were exhausted.all 3 of us.
And we also had no clue where his Winter Park office was?? Joe put on a good
face and made his goal to put a smile back on my face because I was very
obviously ready to fall apart. He assured me we'd find the office.probably
by accident. But we couldn't even call for directions until 1 PM when they
got back from lunch and the doctor wasn't due back until 2ish because he had
2 more kids to do. Joe decided to head back the way we came because he knew
Winter Park was that way.and meantime we were hungry, so we got just past
Fairbanks and 17-92 and pulled into a Burger King, found a shady spot and
ate our lunch with Devon still knocked out on my shoulder. When we finished
I called the office and asked for directions. Joe got smug when I told her
where we were and it turned out we needed to be on Fairbanks ;o) He said
"told ya we'd find it by accident didn't I?". Still.we never would have
found the office on our own because it was like 4 turns off that road.but we
did find it. Joe went in ahead and signed us in and asked if the doctor was
back and he was. We thought we'd get in right away because after all, Devon
had just had surgery and we thought that should earn him a bump in line. But
no.we waited for over an hour. Fortunately Devon slept the entire time. And
again.he was sooooooo good for his exam. He even cooperated for him to put
that gizmo on his eyeball to measure pressure. The end opinion was that
everything went about as well as it could have. He said we'd be surprised
how well one could see through the ventilated steel patch. He also said that
Devon's vision "should" be better when he heals and that right now he can
see at least as poorly as he did before the surgery and probably even a
little better. His reasoning is that he can actually see in better when he
looks in Devon's eye whereas before the cataract made it impossible to see
much at all. Sounds reasonable to me :o) SO our hope is that he might just
be able to see better than he ever has when he's all healed since he's had
the cataracts since birth???

 

I think we got home between 4:30 and 5. Donna had picked up Devon 3 RX drops
and an air mattress so we could take turns sleeping with Devon.so she hung
around so she could see him for herself when we got home. Joe unloaded the
car and Donna and I unloaded and walked/carried Devon into the house. He
wasn't real steady nor did he seem to be able to see through the patch. It's
no wonder either because this morning when we took it off to put drops in
and put his gloves back on I held it over my eye and while one may be able
to see through it.but NOT WITH CLEAR TAPE OVER IT!!! 

 

Anyway.He fell asleep on the couch with his gloves on and the patch on. Not
much sleep at all during the night for any of us. I ended up in bed with
Devon (one reason being the air mattress turned out to be the one that
doesn't hold air) and the other being Devon kept sitting up because he knew
I was in there no matter how quiet I was. I ended up crawling in bed with
him. I ended up hearing him messing with the gloves trying to get them off,
pushing like he had to go to the bathroom and basically just fidgeting
unable to sleep because he was too aware of the gloves :o( So I "slept"
about 5 minutes at a time and reaching over to feel if the patch still on
all night. Finally, about 3 AM I gave up and got up and changed him (his
bladder and kidneys woke up around bedtime) and took his gloves off so he
could worry his blocks. He spent the next 4 hours traversing from one end of
the bed to the other worrying his block and trying to see through the crack
in the curtain. At 7:30 I felt like I had a hangover and was truly exhausted
:o( Joe didn't sleep well either even though he wasn't in there. It's his
turn tonight so we'll see how that goes?

 

Today, since we put his gloves back on and took off the patch, Devon is
navigating at least as well as he did before the surgery (yesterday we
couldn't let go of him) and he's a very happy boy albeit a little frustrated
with the gloves. He still manages to pull us to where or what he wants even
with the gloves on which have to be on if the patch is off. He's been
watching and listening to his movies and some music thus far today and just
fell asleep about 10 minutes ago :o) Some guys have all the luck! I just got
his drops in.very easy while he's sleeping :o) And we're about to eat lunch
so I'm sure he'll be awake soon :o)

 

That about covers it I think? 

 

My hats off to those who made it through my update :o)

 

Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (17 yrs old...lover of Fishing, Dragons, Turtles, WofWC,
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (12
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...visit Noah's Never Ending Rainbow at:
<http://www.noahsneverendingrainbow.org/> www.noahsneverendingrainbow.org 

AND...http://livingwithtrisomy13.org/album9.htm

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

AND my new slideshow at: 

http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb
<http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb&skin_id=402&utm
_source=otm&utm_medium=text_url>
&skin_id=402&utm_source=otm&utm_medium=text_url

"Faith sees the invisible, believes the incredible & receives the
impossible"

 



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

Other related posts: