[tri-med] Re: Did you ever wonder?

Penny,

What a post!  I think you have nailed exactly how most of us on the list
feel & live (especially the part about the fries!).  It truly is amazing =
how
much we can take!  We will be praying for you all!


Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife =
to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne=20



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] =
On
Behalf Of Penny Victor
Sent: Sunday, July 13, 2008 10:32 AM
To: tri-med@xxxxxxxxxxxxx; Vve389@xxxxxxx
Cc: Livingwithtrisomy13@xxxxxxxxxxxxxxx; tri-family@xxxxxxxxxxxxx
Subject: [tri-med] Did you ever wonder?

Good Morning All :o)
=20

Be prepared to read or delete now=85yes folks it=92s another epic =
episode in the
Devon chronicles=85

=20

Did you ever wonder just how much you can take? I=92ve been wondering =
that
ALOT lately! As you all know=85Devon=92s 3rd surgery was Thursday. And =
this one
was a very involved one, very risky, and very challenging for the =
doctor. We
knew going in there were/are no guarantees=85but there really was no
choice=85either he had the surgery or he would be permanently blind for =
sure.
At least with the surgery=85he has a chance of recovering some sight.

My brain knows all these things! My brain knows that things could be =
MUCH
worse. But what you may not know is that from the time Devon was =
born=85when I
got my first real glimpse of his eyes when he was 5 weeks old=85I was =
scared
to death that Devon could not see. I remembering wondering how I would
describe what the sky looks like, or a cloud, a flower or bird, a horse, =
or
what mommy and daddy and big brother looked like? How would I describe =
the
color green or blue? I guess I=92d always taken it for granted=85never =
really
thought much about how it would be for someone born without vision. I =
was so
relieved to hear that he had at least some vision in his left eye. It =
may
sound strange but I was as worried about his vision as I was about =
losing
him. And even as he proved to us that he could use what little vision he =
had
so efficiently that most people couldn=92t even tell he was severely =
visually
impaired, I knew that one day we would have to address the cataracts he =
was
born with. Joe and I decided we would take the =93if it ain=92t broke, =
don=92t fix
it=94 stance. Well=85we were blessed with relatively even sailing for =
about 11 =BD
years. Yes, we had 4 or 5 surgeries during that time=85but for some =
reason the
threat of eye surgery scared me more than any other surgery, save for =
his
1st surgery when he was months (his cleft palate repair).

=20

So=85it was with dread and much worry that we took Devon for his surgery
Thursday. It was scheduled until 1 pm, but since we hadn=92t had any =
pre-op
preparation, we had to get there around 10:15 am so we could talk to the
anesthesiologist, and hopefully the post-op nurses. In an effort to
streamline things and so as not to forget important things we wanted =
them to
know about Devon=92s previous experiences=85things that work better for =
him, and
things to make things less traumatic for him=85I decided to organize it =
all.
First of all, the pre-op nurse who called me asked for a list of =
previous
surgeries and since they only have 2 little bitty lines on the sheet =
they
give everyone to fill out, I typed up my list so they could attach it. =
After
all, this was our 3rd time in less than 3 months filling out that =
blasted
paperwork and I was looking for ways to make everything easier. At =
first,
that was all I was going to type up=85but then I looked at my little =
half
sheet of paper with all our questions scratched on it along with several
sticky notes with additional questions as we thought of them, I decided
maybe I better make that a little easier to read too. So after typing =
that
one up complete with an *A for questions for Anesthesiologist and a *D =
for
questions for the doctor=85I thought I was done. But you all know =
me=85sometimes
I tend to ummmmmmmm=85micro-manage so to speak :o) For school I always =
type up
what I fondly refer to as my =93Devon Do=92s and Don=92ts=94 list. =
It=92s basically a
list of things I want his teacher and aids and school ESC administration =
to
know/be aware of to make things easier and less stressful for Devon and
hopefully staff as well. So, I typed up a list of points of concern and
things we wanted the post-op nurses and doctors to know. I believe they =
were
a little surprised when I had handouts made for all of them :o)

=20

With surgery being so late in the day and Devon not allowed to have food =
or
drinks, we expected the worst in behavior due to frustration. As soon as =
we
entered the pre-op/surgical waiting room he started fussing so Joe took =
him
outside to race around in his stroller like a maniac. He LOVES that! The
paperwork was much easier this time and didn=92t seem like there was as =
much
of it??? The lady at the desk in there was a very nice older woman =
although
I didn=92t look to see what her name was. It wasn=92t that long before =
they
called us back to our own small but private little room. Again, Devon =
was
loud and fussy at first but daddy turned on the silly and Devon stopped
fussing. I really was no fun to be around. The =93B=94 word would not =
have been
out of line to describe me. Poor Joe! It seemed like his every attempt =
to
make me smile or laugh was like nails on a chalk board. And even though =
I
knew I was being too sensitive and mean and snappy, I couldn=92t seem to =
stop
myself. Thankfully, Joe knows me and understands where it was coming =
from.
He knows how scared I am that Devon won=92t recover any of his vision.

=20

Dr. Mann (the Anesthesiologist) and Melanie (the nurse anesthetist) came =
in
and talked to us and address all of our questions. They usually give the
Versed orally and were concerned that he would not be able to tolerate =
it or
that we might not be able to get them in his nose. But because we told =
them
that Devon responds much faster to the nasal drops and although he =
doesn=92t
like anything up his nose save for possibly a finger when he has an
itch=85they said that they would try that first. When the nurse asked me =
if
I=92d like to be the one t put them in, I said =93Sure=85no problem=94. =
And it
wasn=92t=85I just made him lay down and one quick squirt with half the =
dose and
it was done=85didn=92t lose a drop! It wasn=92t 5 minutes later and =
Devon started
to get into the zone :o) I also put the drops in his eyes every 5 =
minutes
for 3 reps=85again=85no problem. They soon realized that we were =
veterans and
none that stuff really traumatized any of us and Devon was used to it =
and
although he=92s not fond of any of it he is resigned to it. Somewhere in =
there
Dr. =93Mav=94 came in and answered our last minute questions and =
reviewed what
all the possible things he would be doing once the exam while under
anesthesia  was complete. He explained that he would come out to us in =
the
waiting room and tell us what he would have to do based on what he found
once he got in there. About 5 minutes to 1pm, the nurse came in and told =
us
the doctor was running around 25 minutes behind :o( BUMMER! Devon =
started to
get more fidgety again and Dr. Mann brought me another half dose of =
Versed
drops to put up his nose. Finally around quarter of 2, they came in to =
take
our little man. I had been very weepy and emotional all day and =
tearfully
kissed him =93see you later=94 and Joe took his turn. Devon rode back to =
the OR
sitting up and looking back and forth between all the nurses and doctors
surrounding his gurney and smiling at them and laughing and looking =
around
at all the lights. Keep in mind I had let them know on my one handout =
that
Devon should not be underestimated, that he was fully capable of getting =
off
the gurney to leave if they didn=92t have anyone standing there to make =
sure
he didn=92t. I also told them that he understands everything they=92re =
saying
save for the medical terminology stuff and that they should talk to him,
joke with him, etc. If they did all that it would insure that Devon =
would be
as relaxed and comfy and happy as possible so that when they went to
administer he gas, he would be cooperative. So=85they were all talking =
to him
with very animated voices and I was pleased to see how happy he was
listening to them all :o)

=20

Not even 10 minutes later a nurse came out to tell us that they were =
both
amazed and happy at how fast and easy he went under :o) And then what =
was
probably another 15 minutes, the doctor came out to tell us what he=92d =
found.
It wasn=92t good :o( We already knew his retina was detached. He said it =
was
fully detached as opposed to partially but he said it didn=92t really =
matter
if it was partial or full detachment=85but at least it wasn=92t torn. =
Bad news
was that there was already scar tissue forming around his newly placed =
lens
and that he MAY have to remove it=85it sounded pretty probable that he =
would
have to. We were devastated to hear that=85 as it seemed to us that that =
means
that his other 2 surgeries were rendered null and void :o( We asked what
that meant in terms of his ability to see. The doctor said that scar =
tissue
could be a big problem because of how rapidly it had formed around there
already and around the retinal detachment as well. He said that young =
and
healthy children=92s bodies tend to do that because it thinks it=92s =
helping the
body heal itself. To be honest it nice to hear that he thought of Devon =
as
young and healthy instead of flawed because if his extra genetic =
material.
He did tell us that the silicone oil bubble that would be injected, =
while
working differently than the silicone lens that may have to be removed,
would also work similarly in the way it refracts light and work somewhat
like the lens to help him see=85again=85IF scar tissue didn=92t become a =
problem.
He also hoped to be able to put the sclera band/belt around the outside =
of
his eyeball but he was unsure if that would be possible because the size =
and
shape of Devon=92s eyeball. It really didn=92t sound good=85the tone he =
used let
us know that he was very unsure if the turnout would be good. I just sat
there and cried and cried.=20

=20

The surgery was supposed to take about an hour. Other out patients came =
in
with their families, were taken in, families came back and waited and =
then
were called back one by one to their loved one once they were in =
recovery.
And there we sat=85and sat. We were pretty sure that what usually took =
an hour
for a =93typical=94 detachment, would most likely take longer on Devon =
because
of all the complications due to the unusual anatomy of his eyeball. =
Still, I
was really starting to worry about how long it was taking :-( It =
wasn=92t
until almost 5PM that they came in to get us. The decision to let Joe =
and I
come back BEFORE Devon woke up had been left up to the nurses. And
again=85they took heed of our advice regarding the speed with which he =
would
awaken once he slept it off for at least an hour and a half and how =
upset,
scared and agitated Devon would be when he woke up blind and in a =
strange
place. Kristen was his primary nurse and she called us back even before =
the
doctor was done :o) She said she knew they would be done soon and in an
effort to make things as easy for Devon (and us) as possible that they =
had
decided that rather than have them take him to phase one post-op and =
then
phase 2 (which is where we were for pre-op)=85that they would just skip =
phase
one and bring him directly to phase 2 and have us there waiting for him. =
It
took another 15 minutes before they brought him back to us. He always =
looks
so helpless when he comes back=85I always feel an overwhelming need to =
kiss
him and touch him and talk to him. This time he seemed to be sleeping =
much
deeper and more relaxed somehow. Dr. Mann and Melanie told us that they =
had
given him a small dose of Morphine, Fentanyl and Zofran in an effort to
relax him and make him awaken more slowly and hopefully less agitated.
Well=85let me say that while we were a little concerned that he was =
given
morphine (the =93big guns=94 kind of drugs usually scare us with =
Devon)=85it
definitely DID relax him more and he =93woke up=94 if you could call it
that=85much slower and less agitated. In the meantime Joe and I were =
right
there with him waiting patiently while he slept. For the first hour and =
a
half we could tickle his feet, =93beep beep=94 his nose=85whatever=85and =
he didn=92t
even flinch. But his heart rate and O2 sats remained good so we didn=92t =
worry
too much.=20

=20

In the meantime Dr. =93Mav=94 told us that he DID have to remove his =
lens (and
thankfully because he=92d forewarned us, we/I was prepared for that
probability=85and it wasn=92t as hard to hear the second time). He said =
that he
had found a very tough bit of clear and very hard to see scar tissue =
hanging
onto his retina along with at the back wall of his eyeball. He was very
pleased at how successful he had been able to peel it all away with out =
a
problem. He was also very pleased that he was able to get a sclera belt
around his eyeball. He was much more positive sounding this time which =
made
us feel a bit better about things. I asked how they get the Vitreous gel
out? I wondered if they suck it out or use a melon baller=85or what? =
THAT got
a chuckle out of all of them :o) I guess they have to cut sections of it =
and
suck it out a little at a time. I also asked how we would know if more =
scar
tissue was forming and he said we would know because he would checking =
on
Devon frequently. He said we were =93stuck with him=94 for a while :o) I =
told
him that if we had to be stuck with someone we were glad it was with him =
:o)
I also asked if this meant that the oil bubble would be left in now to =
act
as his lens? And he said that yes=85in all probability, the bubble would =
be
left in for as long as it didn=92t cause any problems. Scar tissue was =
also
removed with the removal of his new lens. Now we just need to pray that =
the
scar tissue does not reform, that the retina heals and reattaches
flawlessly, and that he will again be able to see=85a lot to ask=85but =
that=92s
the truth of it.=20

=20

Joe and I were both dead on our feet and very hungry. Cheese and peanut
butter crackers do not enough food intake for the day make :o( And the
lovely woman at the desk in the waiting room felt very sorry for me I =
think
because I cried so much. I was very quiet and private about it but she =
was
apparently keeping an eye on me=85because even though she knew there was =
no
consoling me, she brought us bottled water :o) By 7 pm, Kristen and I =
were
thick as thieves :o) She and the other 2 nurses on staff  (Carol and =
Susan)
at that time were very attentive and very charmed and impressed with =
Devon
and us too I suppose. They all asked many questions and were really both
interested and shocked to hear about T13 and how it related to Devon and
other children=85and about some of the medical community=92s treatment =
or
non-treatment/dismissal of them. It was clear that Devon had won their
hearts and we, their respect and admiration (as uncomfortable as that =
makes
us to be told). I don=92t think Joe and I have been that mentally and
physically exhausted since Devon was born and the following year =
really???
Joe was able to get coffee from the waiting room and was satisfied with
that. Kristen asked me if she could have Carol or Susan get me something
special. She said that they had a machine back there that could make any
kind of those fancy coffees. When she said Cappiccino =
(sp?)=85well=85that got an
excited, =93you would really make me a Cappiccino???=94 out of me :o) I =
asked if
they could just hook it up to me intravenously??? They couldn=92t :o( =
But they
brought me a frothy Milky Way Cappiccino a few minutes later :o) I told =
them
that I hoped my lists hadn=92t offended anyone and that I had only been =
trying
to make things as easy for Devon (and us and all of them really) as
possible. They said that while they had never had anyone give them such =
an
organized approach complete with handouts before=85that it really had =
made
things much easier for them and they were grateful for it. They said =
that
they wished a lot more parents would make them aware of things like
that=85that it would help eliminate a lot of trauma for their children =
and for
them. Kristen said that not too long ago they had a young girl in that =
was
in some way mentally and physically challenged and that no one had told =
them
that she would freak out when they tried to take her BP. She apparently =
did
just that and before it was over Kristen had taken a hard kick to her
stomach :o( She said that AFTER the fact her parents had told her that =
that
happens all the time.

=20

We were finally able to roust Devon enough that he was helping us dress =
him
and with all the post op instructions given and everything taken care of
ahead of time in case he woke up and went ballistic=85we were able to =
load him
up in the stroller without incident and get him in the car. Mom and =
Donna
were beside themselves because we hadn=92t been able to call them from =
the
recovery room. We ended up stopping at a Mc D=92s in Orange City before =
we got
home. Devon got sick in the car but we were ready for him because he=92d =
had
=93that look=94 on his face when we were loading him up in the stroller. =
Carol
handed me a little bitty kidney shaped pan when I asked for =
something=85I
laughed when she gave it to me and explained that when Devon gets sick =
he=92s
like the exorcist and that little bitty pan wasn=92t going to begin to =
contain
it :o) She gave me a big plastic bag, a towel, and wash cloth and that
worked just fine. I had to laugh because there I sat in the back seat
clutching the puke bag in one hand and popping French fries in to my =
mouth!
I told Joe=85we must be REALLY hungry because that=92s just gross!!! Not =
that
I=92d actually touched the yuck=85but still=85

=20

We had to take turns trying to walk Devon into the house. We walked him
straight to his bed and helped him in. The doctor told us he needed to =
have
his head elevated and happy to hear about Devon=92s special bed. We were =
both
concerned about how Devon was still sleeping so soundly even though we =
had
been able to roust him. And since the occupant of a Vail bed is not =
supposed
to be left unattended when the bed/mattress has had the head or feet
elevated because a person could burrow easier then and get stuck and
suffocate, I decided I was going to sleep with him #1 so I could feel =
him
breathing and so that I could be sure he was getting himself stuck. He
didn=92t move one limb until 1:10. At which time he woke up long enough =
to
thrash around really PU=92d  and demand something to eat and drink :o) I =
had
thought ahead and packed his little Igloo with a couple drinks and =
yogurt
and a banana and brought it into his room. He ate half a banana and =
drank
some juice and promptly fell back to sleep and he also made it clear =
that
since he could now feel my presence in his bed, he didn=92t want to =
share it
anymore. I got kicked out and made to sleep on the floor on his sleeping =
bag
:o( And let me just say that it was NOT comfortable by any stretch of =
the
imagination! I asked mom to borrow her 2 foam pads after that and =
although
it=92s still not really comfortable, it=92s better than the floor alone!
Unfortunately since he literally slept for about 2 days, he is now not
sleeping at night at all! I don=92t think I=92ve ever been as frustrated =
or
angry at him as I was last night and it scared me. The pediatrician
prescribed Ambien for him and I did give it to him when he woke up =
Friday
night when I put him in bed. He fell asleep in about 10 minutes but only
slept about 3 hours and was up and down the rest of the night :o( Last =
night
was worse=85the Ambien didn=92t work at all. It says that it may take =
5-7 days
before you notice a difference in his sleep but I feel like it=92s not =
going
to help since it made him fall asleep quickly the first night but not =
the
second. And we only want to use it for a week to 10 days to see if we =
could
change his sleep clock=85not indefinitely. I may be calling the doctor =
to talk
to him about the Serax=85because it=92s supposed to help him STAY asleep =
as
opposed helping him fall asleep which he really has no problem with as a
rule.

=20

Devon=92s round little moon face is much more swollen on the left side =
now and
when we had him to the doctor the morning after surgery and while =
expected
it to be swollen there was bloody tears and as it turned out I was right =
to
be scared of what his eyeball would look like. It doesn=92t even look =
like an
eyeball really and I have a hard time believing that it will ever look =
like
an eyeball again :o( It IS HORRIBLE looking=85looks like hamburger :o( =
The
doctor kind of chuckled and said that although the outside of his =
eyeball
may look bad=85the inside looks just like it should. We=92re to go next =
Thursday
before conference for another check up. Truth be told=85I=92m kind of =
glad that
it=92s swollen shut at the moment although after much effort trying to =
open it
yesterday without a lot of luck, he can open it a little bitty slit =
today.
He is navigating much better today and obviously can see light at least. =
He
even pointed at things on the screen although I think it was just =
because he
knows they were there as opposed to actually seeing anything =
discernable. We
were told not to expect him to b able to see anything for a while. We =
have
to shadow him closely which is exhausting=85but necessary to keep him =
from
falling and tripping or running into things. This surgery has definitely
been MUCH more involved and traumatic for his eye, for him and for us! =
There
is pain this time because that awful torturous looking device that is =
the
equivalent of a rib spreader for the eyeball had to be used and several
incisions had to be made and then sutured in the surrounding tissue to =
his
eye. Not to mention that the actual surgery is MUCH more invasive and
traumatic for his eyeball. We=92re using Acetaminiphen suppositories for
discomfort and pain. And he has 3 drops to be used daily until further
notice.

=20

Joe, and Nick and I are managing and Donna is here this afternoon while =
I go
grocery shopping. Between the 4 of us today, we are determined that he =
WILL
NOT SLEEP until at least 6 tonight. It=92s been a real challenge thus =
far. I
let him take a nap this AM but have been pestering the living daylights =
out
of him relentlessly since waking him up. Now Donna, Daddy and Nick will =
have
to take over while I=92m gone and help to pester him to stay awake ;o) =
Wish us
luck =85we=92re going to need it!

=20

I=92m really trying to be hopeful=85my faith is generally pretty strong =
but to
be honest my usual determination and positive thinking for him is =
beginning
to wane.=20

I find myself crying every time I turn around and I=92m more worried and
scared more than ever even though my head and heart knows it could be
worse=85after all=85

he=92s still here and even though he=92s frustrated and uncomfortable =
right
now=85he=92s still here and for the most part a happy boy. And as Joe =
says=85it=92s
true things haven=92t gone as we=92d planned and hoped for, there=92s =
still hope
for his vision and in the event he does not=85then we=92ll deal with it =
just
like we=92ve dealt with every thing else. Still=85prayers for strength =
and
success for me/us would be greatly appreciated. And prayers for Devon to
heal flawlessly, for scar tissue to cease forming and for his sight to =
be
restored are greatly needed.

And thanks ahead of time=85

=20

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
(13yrs...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 and now Smoochie=85Devon=92s new pal:o) Please visit the =
webpage my
wonderful friend Karen made for me on our trisomy listserv at:

http://www.trisomyonline.org/victor.html     =20

AND...visit Noah's Never Ending Rainbow at:
<http://www.noahsneverendingrainbow.org/> =
www.noahsneverendingrainbow.org=20

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

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

AND my new slideshow at:=20

http://www.onetruemedia.com/shared?p=3D3e291611cb644c422ff6bb
<http://www.onetruemedia.com/shared?p=3D3e291611cb644c422ff6bb&skin_id=3D=
402&utm
_source=3Dotm&utm_medium=3Dtext_url>
&skin_id=3D402&utm_source=3Dotm&utm_medium=3Dtext_url

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

=20


                  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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