[tri-med] Did you ever wonder?

Good Morning All :o)
 

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

 

Did you ever wonder just how much you can take? I?ve been wondering that
ALOT lately! As you all know?Devon?s 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?but there really was no
choice?either he had the surgery or he would be permanently blind for sure.
At least with the surgery?he 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?when I
got my first real glimpse of his eyes when he was 5 weeks old?I 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?d always taken it for granted?never 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?t 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 ?if it ain?t broke, don?t fix
it? stance. Well?we were blessed with relatively even sailing for about 11 ½
years. Yes, we had 4 or 5 surgeries during that time?but 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).

 

So?it was with dread and much worry that we took Devon for his surgery
Thursday. It was scheduled until 1 pm, but since we hadn?t 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?s previous experiences?things that work better for him, and
things to make things less traumatic for him?I 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?but 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?I thought I was done. But you all know me?sometimes
I tend to ummmmmmmm?micro-manage so to speak :o) For school I always type up
what I fondly refer to as my ?Devon Do?s and Don?ts? list. It?s 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)

 

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?t seem like there was as much
of it??? The lady at the desk in there was a very nice older woman although
I didn?t look to see what her name was. It wasn?t 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 ?B? 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?t seem to stop
myself. Thankfully, Joe knows me and understands where it was coming from.
He knows how scared I am that Devon won?t recover any of his vision.

 

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?t
like anything up his nose save for possibly a finger when he has an
itch?they said that they would try that first. When the nurse asked me if
I?d like to be the one t put them in, I said ?Sure?no problem?. And it
wasn?t?I just made him lay down and one quick squirt with half the dose and
it was done?didn?t lose a drop! It wasn?t 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?again?no 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?s not fond of any of it he is resigned to it. Somewhere in there
Dr. ?Mav? 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 ?see you later? 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?t have anyone standing there to make sure
he didn?t. I also told them that he understands everything they?re 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?they were all talking to him
with very animated voices and I was pleased to see how happy he was
listening to them all :o)

 

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?d found.
It wasn?t good :o( We already knew his retina was detached. He said it was
fully detached as opposed to partially but he said it didn?t really matter
if it was partial or full detachment?but at least it wasn?t torn. Bad news
was that there was already scar tissue forming around his newly placed lens
and that he MAY have to remove it?it sounded pretty probable that he would
have to. We were devastated to hear that? 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?s bodies tend to do that because it thinks it?s 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?again?IF scar tissue didn?t 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?s eyeball. It really didn?t sound good?the 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. 

 

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?and sat. We were pretty sure that what usually took an hour
for a ?typical? 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?t
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?they 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)?that 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?I 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?let me say that while we were a little concerned that he was given
morphine (the ?big guns? kind of drugs usually scare us with Devon)?it
definitely DID relax him more and he ?woke up? if you could call it
that?much 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, ?beep beep? his nose?whatever?and he didn?t
even flinch. But his heart rate and O2 sats remained good so we didn?t worry
too much. 

 

In the meantime Dr. ?Mav? told us that he DID have to remove his lens (and
thankfully because he?d forewarned us, we/I was prepared for that
probability?and it wasn?t 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?or 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 ?stuck with him? 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?in all probability, the bubble would be
left in for as long as it didn?t 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?a lot to ask?but that?s
the truth of it. 

 

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?because 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?and about some of the medical community?s 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?t 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?)?well?that got an
excited, ?you would really make me a Cappiccino???? out of me :o) I asked if
they could just hook it up to me intravenously??? They couldn?t :o( But they
brought me a frothy Milky Way Cappiccino a few minutes later :o) I told them
that I hoped my lists hadn?t 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?that 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?that 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.

 

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?we 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?t been able to call them from the
recovery room. We ended up stopping at a Mc D?s in Orange City before we got
home. Devon got sick in the car but we were ready for him because he?d had
?that look? 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?I
laughed when she gave it to me and explained that when Devon gets sick he?s
like the exorcist and that little bitty pan wasn?t 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?we must be REALLY hungry because that?s just gross!!! Not that
I?d actually touched the yuck?but still?

 

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?s 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?t move one limb until 1:10. At which time he woke up long enough to
thrash around really PU?d  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?t 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?s still not really comfortable, it?s 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?t think I?ve 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?the Ambien didn?t 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?s 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?not indefinitely. I may be calling the doctor to talk
to him about the Serax?because it?s supposed to help him STAY asleep as
opposed helping him fall asleep which he really has no problem with as a
rule.

 

Devon?s 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?t 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?looks like hamburger :o( The
doctor kind of chuckled and said that although the outside of his eyeball
may look bad?the inside looks just like it should. We?re to go next Thursday
before conference for another check up. Truth be told?I?m kind of glad that
it?s 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?but 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?re using Acetaminiphen suppositories for
discomfort and pain. And he has 3 drops to be used daily until further
notice.

 

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?s 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?m gone and help to pester him to stay awake ;o) Wish us
luck ?we?re going to need it!

 

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

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

he?s still here and even though he?s frustrated and uncomfortable right
now?he?s still here and for the most part a happy boy. And as Joe says?it?s
true things haven?t gone as we?d planned and hoped for, there?s still hope
for his vision and in the event he does not?then we?ll deal with it just
like we?ve dealt with every thing else. Still?prayers 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?

 

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?Devon?s 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      

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

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