[tri-med] Re: Seeking Help

Wow, what a great experience you have had!  

Jennifer, mom to Elanor-4!, full T18; and Arwen-6; caregiver to Joe-25
cerebral palsy & spastic dysplasia; wife to Andrew-32 and wonderful! 
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Meierlaw
Sent: Wednesday, January 28, 2004 12:25 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Seeking Help 

Hi, Fawna:

Thank you for the kind welcome.

I am so sorry to read of all the negative experiences you have had with
your
doctors.  I gather that many other parents in the group have gone
through
similar trials.  I can certainly understand how one would become cynical
toward doctors under the circumstances and I would likely feel the same
way.
I have not experienced much negativity from our doctors/therapists at
all -
and at one time I averaged 5 appointments a week for Rachel (I am
currently
down to about 3.)  Our pedi is fantastic.  She loves Rachel and goes
above
and beyond the call of duty to help us.  She even came up to the NICU on
a
Sunday afternoon to meet us when Rachel was born.  By that time, Rachel
was
in the control of the hospital neonatologists, but our doctor wanted to
see
Rachel and to introduce herself to us.  With Rachel being our first
child,
we had signed up with her practice in advance, but we had no cause to
meet
her before the birth.  My brother-in-law, a pharmacist at a clinic where
she
worked during med-school, recommended her to us and it was truly
providential that he did.  She is wonderful.

In the NICU, however, the neonatologists weren't so enthusiastic and
open.
The hospital was pressing us for Advance Directives in case of apnea and
Bob
and I wanted Rachel to be put on a ventilator if necessary. The one
doctor
kept saying we shouldn't because it would only "delay the inevitable."
I
was stunned at his comment.  I understand his point, but we weren't
going to
just walk away without a fight.  We knew that some 18's do live (Thanks
to
Karen's great website!) and we were going to do everything possible to
prolong Rachel's life in case she could become stable and be one of the
10%
of long-term survivors.  Moreover, Rachel just wasn't doing that bad.
Other
than the jaundice and poor sucking, she looked fine.  It took me a long
time
to forgive that man for his attitude.  Dr. Hopkin, our geneticist, was
also
very statistical in his advice to us.  He is actually a very learned man
and
a good doctor, but he refused to have faith in the possibility of
survival.
You have to understand that that is why I find it so significant that he
now
carries Rachel's picture with him and uses her as a teaching example to
his
Residents.  Rachel seems to have reached him and he now believes in her
-
and all other children with catastrophic conditions.  He fully admits
that
each child has to be viewed individually.  Such a perspective is all we
were
asking of the doctors in the NICU.  Ironically, one of the
neonatologists
from the NICU had to examine my son the day after he was born last July
and
she remembered me from Rachel.  Our pedi and a mother/baby nurse friend
of
mine have kept her apprised of Rachel's progress over the years.  She
asked
about Rachel and commented to me - with humor - that she "sure called
that
one wrong" didn't she.  We laughed, but she also realizes that each
child is
unique in their condition.  I was thrilled that she was humble enough to
admit it.

We have had no trouble with any of the 13+ medical providers Rachel has.
Our cardio actually laughed when we told him that the neonatologists
said
Rachel's heart defects would "kill her."  He said her heart wasn't that
bad
and that she could lead a normal life as far as her heart is concerned.
She's had two cardiac cath procedures since then.  In fact, when she was
in
the CCU after the first procedure, SEVEN doctors came in the room to see
her
that evening.  They wanted to see an 18.  It's not every day that
doctors
get to see an 18 who is a little older and they were happy to meet
Rachel.

None of the doctors on our Rachel Team (as we affectionately call it)
have
ever treated us negatively.  We have had two instances where Dr. Hopkin
had
to write letters of necessity to our insurance company because they
refused
to pay for treatment stating that, since Rachel is an 18, she's going to
die
anyway.  Dr. Hopkin immediately wrote to enlighten them and explain
that,
because Rachel IS an 18 she needs the services all the more and while
Rachel
is an 18 and at risk of sudden death, she's alive NOW!

Even when we enrolled Rachel in Early Intervention, the EIS showed up at
my
door full of enthusiasm.  She hadn't heard of T-18 before, but she had
done
some research on it after Rachel was assigned to her and we worked from
there.  I have to educate people about T-18 all the time; just recently
the
local school district so Rachel can start attending preschool next Fall.

On Rachel's first birthday, our entire pedi office (they have about ten
doctors - it is a very large practice) threw her a birthday party.  Bob
took
off work and we went over after lunch and they had balloons, a birthday
poster and four gallons of ice cream waiting in the conference room.
Everyone in the office who was available came in and sang to her and
wished
us well.  She seems to be their star patient.

So, long story short, the doctors and therapists we work with have
always
seemed delighted to be able to have an 18 as their patient.  Again, it's
not
a condition they see every day so they are glad to be able to say they
have
treated an 18.  When I call a new specialist, it seems like all I have
to do
is say that my daughter has Trisomy 18 and doors open to me.  I am
always
treated with respect.  I ask every single one of our providers to carbon
me
in on all dictation that gets sent to our pedi.  If they forget to send
it,
I call their secretaries - who I now know by name and they all know me.
I
have two 3" binders full of medical records from all of Rachel's visits.
I
have separated the binders into categories for every department we see:
Cardiac, Nutrition, ENT, Genetics, Neurology, Ophlalmology, MRDD, OT/PT,
CranialSacral Therapy, ST and so forth.

Maybe it's because we live in a city with a world-class Children's
Hospital.
I don't know, but I sure am glad that we have the providers we have.  In
fact, because of our positive experience, Bob and I wanted to take a
special
needs child when we decided to adopt.  (I'm 44 and an infertility
patient.)
Our younger daughter has heart disease and is seriously delayed (so far
the
chromosomal tests have come back negative, but the symptoms are still
there.)  God gave us the life of our daughter, Rachel, so we wanted to
use
all of the knowledge and experience we have gained from having Rachel
and
give something back by taking a special needs child.

HOW SORRY I AM THAT YOUR JOURNEY HAS BEEN SO MUCH MORE DIFFICULT.  I,
TOO,
HAVE BEEN ENLIGHTENED.

Best regards-

Aimee in Cincinnati, Ohio (USA)
(wife of Bob; mother to Rachel 2-1/2  (T-18), Jillian 1-1/2 (our China
baby)
and Ian 6 months)


----- Original Message ----- 
From: "Fawna Lockwood" <fawna33@xxxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Tuesday, January 27, 2004 2:40 PM
Subject: [tri-med] Re: Seeking Help


> >Fear not, Dr. Hopkin isn't naive - just very skeptical.
> >We are well aware that there are plenty of long term survivors
> >(as I am sure he is, too)...My only reason for pointing out how
> >he has come around since working with Rachel is because I detected
> >much cynicism toward doctors from the group and my husband and I
> >don't necessarily share those feelings regarding our doctors.
>
> Aimee,
>
> I'm way behind here in my mail...and I'm not ever sure if I've
> welcomed to the list yet or not...
>
> If not or again WELCOME!
>
> If some of us seem a little jaded on doctors, it's because of
> personal experiences...however there ARE some really good ones
> out there too.  It's just a matter of shifting out the keepers
> from all the rest.
>
> We've had nothing but good pediatricians, total of 4.  Even the
> 2 we got stuck with through HMO's were caring and wonderful.
>
> But I've still gotten very good at firing doctors....
>
> But took us 3 cardiologists to get one who would talk to and level
> with us about our child's heart condition.  1st one even "made
> up" a family history for her hospital chart....I don't know what
> else to call it.  "No relevant family history."  I read that when
> I finally got my hands on her medical records.  Woman didn't even
> bother to ask me or my husband about family history.  My dad had
> a heart murmur and died in his 50's of a heart attack...my sister
> had a murmur she out grew at puberty, and her youngest daughter
> had the same murmur (aortic stenosis) and went on to have open
> heart surgery at 12.  That was exactly the same dx our daughter
> ended up with. Secondary dx of PDA that didn't close on it's own.
> My husband has a niece with that one.  Trisomy or just family?
> Who knows.  2nd doctor I swear was just going do let her die
> without even telling us what our options were.  3rd one wasn't
> allowed to work in the hospital anymore due to too much radiation
> exposure, but he was a real gem.  Told us exactly what we were
> dealing with, all of our options, and let us decide what we wanted
> to do about it.  Dr #2 got stuck doing the PDA surgery....he was a
> excellent surgeon, just a crummy human being.  We've gone through
> numerous cardiologist since due to their moving, and all have been
> wonderful.  Once she made it past her death sentence of 3 and was
> walking, communicating, etc, they didn't even question she was worth
> the effort....
>
> Took 2 eye doctors...1st one we'd ask a question and he'd give us
> a 10 minute response that always ended with, "But that's not what
> she's got."  It was like pulling teeth to get his written records,
> and then they turned out to be hand written and totally illegible.
> 2nd and all subsequent doctors have been good (except for one short
> stint with an HMO who's doctor had no idea how to examine her, and
> just declared she didn't need glasses - she'd been wearing them
> for years, and did again just as soon as we changed insurance again.)
>
> 2 ENT's  1st one could never remember who we were, where we lived,
> what she was allergic to, and that we had private insurance, not
> MediCal (Medicaid equivalent).  He only wanted to treat the symptoms
> not figure out why she'd had one continuous ear infection since birth.
> He also made her ears bleed every time he examined her.  Last time he
> did, I let go of her feet and let her kick him in the crotch before
> finding a new doctor at age 4.  Old doctor had told me removing her
> adenoids wouldn't help, when I'd asked him about it.  First words out
> of replacement's mouth, "Has she ever had an x-ray taken of her
> adenoids?"  He sent us down stairs to x-ray immediately, and started
> the paperwork for the surgery before we left that day.  They were
> the biggest adenoids he'd ever removed at that time, and were totally
> wrapped around and cutting off her eustachian tubes.  He had her ears
> stable with diligent prophylaxis treatments.  Had another bad
experience
> with the HMO's ENT who only wanted to treat the symptoms again.  Went
> back to the good one just as soon as we could.  And we're still with
him
> at age 21, and adore the man....
>
> Neurologist, actually have the worst one of those to date currently.
> Only person I've ever met who can yawn in your face without opening
> her mouth, but she's the only choice in the best office in the area,
> due to my child's "advanced" age.  Still annoying though that I knew
> less when I left the initial consultation with her then I thought I
> did when I walked in the door.  Over the years she's seen by 6 doctors
> in that office, and two others during HMO times.  Of the whole lot,
> I'd only give 3 of them high marks...and at least one of those thinks
> I'm totally whacked.  Just between you and me, he's probably right....
;)
>
> Oh by the way, by education I'm a medication/treatment nurse, but
these
> days I'm my kid's "In Home Support Service's Worker" & private duty
> nurse....
>
> Fawna, mom to Thom & Rhonda, Lara and
> Philina 21 (PT6p & Moya Moya Syndrome)
> wife of Douglas, 10 >^..^<, 3 llamas,
> 2 tortoises, & 1 musk turtle,
> Philina's Pharm Bengal Cattery
> Escondido, CA., USA
> http://home.mindspring.com/~fawna33/index.html
> ~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~~*~
> There is a theory which states that if ever
> anybody discovers exactly what the Universe
> is for & why it is here, it will instantly
> disappear and be replaced by something even
> more bizarre and inexplicable. There is yet
> another theory which states that this has
> already happened.
> ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>

                  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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