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January 1 2001
Congratulations to Brittany Coats this years CMN ambassador for
Washington State! We really enjoyed our experience with CMN and
we're sure she will too!
We're excited for Zach to be back to school on Wednesday.
He's been carrying a picture of his class around with him all
weekend so we think he's excited too.
January 15, 2001
All's been going well. Zach. I've been on the road filling in
at other pharmacies a lot which makes it really fun when I come
home. Zach gets really excited when I come home from being gone
and we have big wrestling matches and play computer games together
as soon as I get home. I decided today that I'm going to buy
two extra weeks of vacation next year so Zach and I can spend
more time together. We've been trying to explain about his new
brother or sister that's on the way but I'm not sure it's sinking
in yet.
January 20, 2001
Finally got time to respond to Andrea's encouraging note about
her son Raiden today. More than five months out from a heart
transplant and he's only 5 & 1/2 months old! Amazing. Raiden
had HLHS which is Hypoplastic
Left Heart Syndrome. A death sentence only a decade ago and
now it can often be treated with surgery or in situations like
Raiden's with a heart transplant. Once the baby is born a donor
needs to be found quickly so the donor shortage is a big issue
with these families. Here's a site I found that explains HLHS
very well.
Zach spent two days a his grandma and grandpa's house in Odessa.
We're getting braver with teaching others to do Zach's medications
but we've still got a long way to go before we'll be comfortable
with Zach being away from us for long. Zach had a great
time!
January 24, 2001
Zach went to his friend Joanie's house to be baby sat tonight
so that we could go to a Lions club dinner. We are told Zach
had a wonderful time and played like crazy! His favorite sign
language word "more" gets put to use more and more,
especially when he plays.
I haven't been sharing the E-mails we get much lately but I'm
always amazed at how the internet shrinks the earth and brings
us in contact with people from other countries. Here's a note
from Rosenn in Nice, France.
Hello,
Im am writing from France (Europe). I apologize for my broking
english...
I spent nearly a half-day reading the story of zach. I work at
the
hospital of Nice (Cote D'Azur) and I am in charge of people education
on
organ donation.
I'd just like to tell you how important your web page is. It
is in
Europe as difficult as in the US to have people accept organ
donation.
But your struggle for life and the smile on Zach's face will,
for sure,
convince them all.
Thank you, it gave me more courage and faith in my job.
I hope zach and you two are now living a "normal",
(I would nearly say
boring) life.
Take care--
Rozenn
Rozenn, thank you for the nice note. I think your English
is just fine,
it's certainly better than my French!!
When I speak on organ donation I usually show a short video on
the Nicholas Effect. You probably already know the story but
in case you don't Nicholas
was a young boy killed in Italy who's organs were donated and
who inspired
many people there to become organ donors. It is our hope that
sharing the
joy in Zachary's like will have the same effect on people in
both the United
States and elsewhere. I hope Zachary's good fortune and the gift
we have
been given can in some small way help you in your very important
job. If
you have time we would be very interested in hearing more about
your work.
Best wishes, Mike, Gina & Zach
January 26, 2001
Please keep Sara Bradshaw in your thoughts and prayers. She is
11 years old and a recent addition to the heart transplant list.
As I write this Gina and Zach are playing and laughing and I'm
reminded of just how lucky we are and how hard it is when your
on the list. Best wishes and best of luck to Sara.
Here is some more from Rozenn in France:
Hello,
My entire name is Rozenn-Mai Petit (indeed I just got married
in ....
Las Vegas because my husband and I went on tour last oktober
through
Grand Canyon, Monument Valley, Death valley and San Francisco
...)
I am not a doctor. I have a degree in philosophy. The gril who
is
working with me has a degree in psychology. We explain organ
donation
and transplantation in schools (at the age of 14 to 18). We always
go to
these schools with some transplanted people because it makes
the whole
debate less abstract.
I also teach bioethics and history of tranplantation at the medical
university of Nice. I write some articles on transplantation,
xenotransplantation and bioethics. We organize some public conferences
with doctors, transplanted people and representants from the
three
monotheistics religions. And we attend fairs.
We also try to assist transplanted people because it is
not always easy
to live with this tranplantation. The first difficulty is psychological.
It can be hard to accept this gift. The second problem is sociological.
In France, before you get transplanted you get money from the
state,
because you are ill. After the transplantation you have to go
back to
work but not all the transplanted manage to get a job. Sometimes
they
have to redo their education to do a different work.
Some of them have serious familial and social difficulties :
thei do not
get any insurance anymore. They do not get any credit at the
bank. When
they are working freelance or on their own it makes the whole
life
harder. I think transplantation in Europe is a medical success
but not a
social one.
We are trying to have them more integrated because these therapies
will
expand in the next decades. It is time to think about a real
integration
of these persons in the concrete life (a day to day life ?).
That is our aim.
I would be very interested in communicate with you and think
about some
possibilities (how is the situation in US)
Today, I am a little tired, I will try to correct my english
in the next
mail.....
best wishes
rozenn
February 3, 2001
Zach's been sick the last couple of days. A cold and a little
fever. Probably no big deal except there's really no such thing
as a garden variety flu with this guy. Zach finally slept a little
with his head on my lap this afternoon. He and Gina only got
a couple of hours sleep last night so hopefully tonight will
be better.
I think I might be a softie for kids: The highlights of my day
were visiting with the 2nd grade class that came to visit my
pharmacy and answering their many questions about what I do,
buying a band candy bar from a young man selling them outside
the grocery store and finally replying to the update I received
on Adam Vassar a Stanford heart transplant patient who is battling
rejection and doing pretty well at it.
The hardest parts of my week were learning that one of Zach's
nurses miscarried the twins she'd wanted so badly to conceive
and today finding out that the three year old nephew of one of
my coworkers has an inoperable brain tumor. The thought of a
little boy the same size as Zachary going through something so
awful and scary with an inevitable tragic end brings tears to
my eyes even now. We sent him the Spinoza bear that Zach got
from the Lions club when he was sick. Zach's done with it now
and the thought of it giving some comfort to a scared little
boy at least makes us feel like we could help a little.
With what Zach's been through I see kids through new eyes
now. My kid sensors are magnified. Every triumph or good experience
a child has seems greater to me and the suffering of the sick
ones I encounter seems all the more tragic. I think that's why
I've been so excited since Gina's ultrasound this week. Because
of our experience with Zach, the ultrasound was very detailed,
especially the heart. We're not counting our chickens before
they hatch but everything points to a health normal little brother
for Zachary! (-:
February 16, 2001
Zach has another big birthday party (he turned four on the 13th)
planned for this weekend. With all Zach's been through we can't
help but rejoice at each mile stone.
Our heart felt thoughts and prayers go out to 5 year old Kyle
and his family from a nearby community. Kyle may soon undertake
Zach's heart-lung transplant journey at Stanford.
Stacy Fuller writes:
Hello! I just finished reading you families story and wanted
to write to you and tell you guys how courageous I think you
all are. I am a nurse at University of Alabama in Birmingham;
working in the Heart Transplant Intensive Care Unit (We also
take care of lung tx and heart/lung). I work with the adult patients
(over 70lbs - we do get a few adolescents). It is a very rewarding
place to work, although it is ofterntimes very hard to "leave
the pts at the door" when I leave after my shift. I have
seen some amazing advances in the short 4 yrs I have worked here
- especially in the area of LVADS. Anyway, just wanted yall to
know I will keep thinking of Zach and his family.
Stacy, whether it's nurses, doctors or teachers, our favorites
have always been the ones who find it hard to "leave the
patients at the door." I wasn't aware of how far LVADS
(left ventricular assist devices) had come and was amazed
at what I found about them on the internet and how far they've
come. From what I can tell they should offer hope to thousands
who otherwise would die on the waiting list. Thanks for thinking
of us, keep up the good work! Mike
March, 6, 2001
Zach had a great birthday party at wonderland last month. Lots
of kids, games and kiddie rides. Every mile stone is a big one
for us so we have LOTS of fun. Zach's nose, chin and forehead
are skinned up from a fall he took on the rocks. He looks pretty
tough. Between that and the fact that he didn't even flinch at
his blood draw yesterday, I'm pretty proud Dad right now! We've
been putting on the bacitracin every day. Even if Zach is tough,
we don't want an infection from his scrapes.
After reading about Prevnar in my latest Pharmacist
Letter I talked to Dr. Maixner and we had Zach vaccinated
with it. Prevnar is a conjugated pneumococcal vaccine against
pneumococcal infections. This will reduce Zach's risk of meningitis
and possibly even ear infections. It's a new drug but will soon
become commonplace since the CDC (Center for Disease Control)
in Atlanta has just added it to their list of recommended vaccinations
for children.
I'm looking forward to telling our story and talking about
organ donation at our Lions club in April.
We see Dr. Garabedian on Wednesday. Along with our regular
check up we are going to explore what testing we can do here
in Spokane and hopefully reduce how often we make expensive trips
to Stanford.
CANDY!
March 30th, 2001
Hi Gina and Mike----this is a formal message to let you know
that Zach
said "candy" during Circle time yesterday...(March
28th) He was so
excited---just knowing his name was going to be called next...."Is
Zach
here today?" And Zach raises his hand and makes the Sign
for
"Here"---and he is very noisy letting us know he's
excited and he knows
we're going to ask him "what color candy corn do you want?"
As soon as
we gave him a choice of yellow or purple---he Signed "Candy"
and the
word just fell out! I think he was as excited as we all were
to hear
himself actually say "candy!!" I'm so thrilled that
Mrs. Baxter was
there to see and hear for herself...she is our Speech Therapist
at
Mullan Road Elementary. Zach chose purple and he ate the whole
piece...(usually he waits until he's got it nice and sticky---and
then
he gives it to me...but, not this time!) Unfortunately he didn't
say
any words for us today...but, hey...we know they're in there,
just
waiting to come out!!! Way to go Zach!!
Zach is a wonderful little boy to work with and we all love
him and look
forward to each little step he takes.
Love from all of us at Mullan Road Preschool...
Sandie, Lisa and Alice
4/19/01
Zach and I spent last night in the hospital with a fever. This
morning it has subsided and we expect him and Gina to be back
home tonight or tomorrow. So far all the cultures for infection
are negative so we hope it was just a brief side effect from
his latest immunization with Prevnar to help prevent pneumonia.
4/20/01
Gina's notes- Friday, April 20th
We finally got out of the Hospital Today and boy were we excited,
we of
course had to go straight to Arby's because Zach did the sign
for Chicken
and have lunch. We started off at getting back from a Very Very
Nice Easter
in Yakima with Family.......Zach had such a blast with all of
his cousins,
and I hated to take him away so he and I stayed an extra day
while Daddy
went off to Wenatchee to work. Wednesday was a typical day we
got up and
were late to school (only 10 minutes) and then I ran to do my
early morning
errands. It was about 10:45 when I got a call from the school
saying Zach
wasn't feeling well, so I went and picked him up and when we
got home he
took an early morning nap which is highly unusual for Zach and
by the time
he woke up he had a fever of 101.8 and of course I panicked,
Mike was still
in wenatchee so I called the Dr.s and took him in and of course
I knew they
would tell us that he needed to go in for a day or two to check
bloodwork
and for any signs of rejection. we got up to 102 on Wed and slept
all day
and night I could definitely tell that zach wan't up to par because
he even
refused cheetoos!!!!
Thursday is a way better day we are up and running just waiting
for throat
cultures, I AM SO TIRED OF A BUGS LIFE AND TOY STORY 2.....ahhhh
Perfect all the test came out negative and no signs of rejection...
so Mike
seems to think that the prevnar vaccine that he had the day before
had
something to do with it....who knows, it seems that Zach just
wants us to
remember who is in charge here. I have to add that I am so glad
that we are
stopping at 2 kids because with lifes ups and downs that the
good Lord has
sent us through Zach I sure don't know how I can do this with
more than two
kids.
5/10/2001
Zach's doing well. Are biggest struggle seems to be getting him
to school on time Tuesday through Friday but I think lots of
families have to work at that! Speaking of school, there are
three new boys in Zach's class. We're excited for Zach to have
a more well rounded environment since there weren't many boys
before. Zach also had a great time at his Grandma and Grandma
Zagelow's during roundup. He rode horseback in front of me while
we moved cattle and was really excited to watch all the action
while we separated the cows and calves. On Monday Zach was vomiting
often during the day and couldn't keep his transplant medications
down. Gina got a hold of Dr. Garabedian's office and his new
partner, Dr. Pamela Berg called in some Phenergan suppositories
that took care of the problem. It's really nice to have Dr. Garabedian
have a partner again and especially one that is familiar with
transplant patients (UCLA). I'm still getting used to her. Although
I keep reminding her of things she already knows, she is very
gracious about it. Friday we're having our first heart catheterization
where they go in through a leg vein with a little scope and look
around in the heart and check for rejection. I'm a little nervous
about it but at least we get to do it here at home in Spokane.
Gina's baby shower is the next day in Yakima so hopefully everything
will go smooth. The doctors.'s said we didn't need to reschedule
it but Zach and I could always stay home if he's too wiped out.
The new baby is due in June so I still expect that might be quite
a culture shock for Zach.
5/17/01
Well there's been lot's going on with Zachary lately. No talking
but he did put a sentence together in sign language (usually
he just says one word at a time). Susan the speech therapist
called from school to tell me Zach said "More Cookie Please"
in sign language. Three words together were pretty exciting but
Zach's heart catheterization last week was our biggest thrill.
Zach scored a zero for his ISHT grade. This is a score that measures
rejection. 0 is best and numbers up to 5 indicate worsening rejection.
A 0 means no acute rejection. YEAH! Also Zach's coronary arteries
were clear. Coronary artery disease often occurs at an accelerated
rate in transplant patients much like that of an older heart
patient with a high cholesterol level. The pictures below are
Zach's left and right coronary arteries when injected with dye.
They look perfect, just like the ones in the diagram I was shown
of how they are supposed to work. The wire circles you see are
the wires that they use to hold Zach's sternum together so that
it would heal after his transplant surgery
Although we are delighted with the results it's not all fun
and games. It took Dr. Garabedian more than an hour to get a
line into Zach's femoral artery. The vein went smoothly and I
could see the wire right away but the arterial line that they
put in took a long time due to Zach's already scarred groin area
where other lines have been inserted in the past. Zach was very
bruised where the two small incisions were made and very sore
for the first couple of days afterwards. Also one note of caution.
A heart cath only shows how the heart is doing. The lungs are
always a greater concern and the first area that would show any
rejection. Zach is still too small for a successful (and always
painful) lung biopsy. As always we assume no news is good news
but we won't really know the big picture as far as how well the
transplant has been accepted until Zach is older.
5/20/01
Zach enjoyed the Spokane Lilac parade tonight with his Uncle
Joe & Aunt Melissa & I. He signed bus when a bus went
through the parade and he really enjoyed all the bands and floats.
Tonight Mr. squirmy and I made it through church while his Mom
was at work. Wheeew! |
