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6/12/01
What a long day! Gina gave birth to Zach's brother Cole this
afternoon. Eight pounds even and 19 & 1/2 inches long. Gina
and Cole are both doing well but it was a little too much deja
vu for my taste. Not only was Cole born in the same room as Zach
at about the same time but he is also spending his first night
in this world in the same part of the neonatal intensive care
unit Zach was in. So far we're hoping the doctors are being hyper-
sensitive (by their own admission) because of what we went through
with Zach. Cole had some low oxygenation when he got upset trying
to breast feed as well as one low blood sugar reading but when
I left for home everything seemed to be going well. Dr. Berg
was on call tonight and she looked at the echo cardiogram and
all seems well for now. We'll no more when the portion that bypasses
the lungs in the womb (the ductus arteriosis) closes. Then the
pressures in his lungs should go down but we're keeping our fingers
crossed until them. High pressures in the lungs was in large
part why Zach needed his transplant but all babies are born with
high pulmonary pressures and then they come down and right now
there is nothing to indicate that won't be the situation with
Cole. More tomorrow but all's well until further notice!
6/15/01
All's well with Cole thus far. He's still in the neonatal intensive
care unit but we're hoping he'll be home in a day or two. Zach
had his last day of school yesterday. He was so excited when
I dropped him off, I'm sorry to see the school year end.
6/16/01 Here's a note we received from one of Zach's teachers,
Sandie:
Hi Gina...I'm glad you're home from the hospital---you're probably
feeling more of a psychological let down and this comes out feeling
like
flu symptoms....with all you've been through and then having
baby Cole
spending some time in ICU going through tests and filling your
hearts
with fears you've been through so many times before with Zach.
The
doctors are being overly cautious....remember--you told me this
a few
times when I worried so much about Zach every time he'd end up
in the
hospital...They want to make sure everything is going okay before
the
little fella is ready to join his big brother at home.
Gee---those raspberry-filled cupcakes would have been a real
treat for
us on the last day of school....guess we'll just have to count
on you
doing this next year in your "spare" time!! It was
wonderful to have
Mike stay and watch Zach on the computer...Zach was the teacher
and the
kids were not allowed to touch the Mouse! They could cheer him
on---and
that was okay!! He blessed me with a nice smelly diaper before
circle
time...(Oh thanks buddy!!) He did something incredibly smart
during
snack time---he is so good at Signing---When a drink choice of
water or
milk was given---he looked at both---water on the left---milk
on the
right---he put both hands out front---and signed "no"
for the water with
his left hand---and "yes" for the milk with his right
hand!! Now that's
what I call "gifted!!" When I took the kids to the
bus---it was hard to
say good bye to them...Zach jumped into my arms and gave me a
big kiss
good bye...(ohhhhh...he makes me feel so good!)
Today was our last work day at school...District 81 is painting
all the
school this summer....inside and out---so, all rooms had to be
boxed up
and prepared for the painters----whew...what a job! I put in
15 hours
over time in the last two weeks...and now I'm really anxious
to start my
summer vacation.
Take care and thanks so much for letting me know how things
are going
with Cole.
Love to all---
Sandie
6/17/01
I had a great father's day today with both my sons at home. Zach
is adjusting well and although he's a little jealous he's doing
a good job of sharing and has been in a great mood. We're doing
our best to try to give him extra attention right now. Zach's
blood next blood draw is in the morning. With the new baby at
home Zach and I will have to do a lot more of Zach's appointments
on our own.
6/27/01
Zach and I had to get up at 5 a.m. this morning after keeping
him up until midnight. He needed to be sleep deprive so that
he could have an E.E.G. to measure for seizure activity. Zach
has not had a seizure since his episode a year and a half ago.
He needed to be asleep for the procedure since they put a bunch
of electrodes on his head. I was able to rock him to sleep at
the doctors office but right we they had about half of the electrodes
on he woke up and pulled them all off! Dr. Lefond decided we
could still taper Zach off of the Lamictal he has been taking
for seizures and see what happens so we're excited that Zach
gets to discontinue a medication. Zach's brother Cole is doing
great and growing, it continues to amaze us how much easier it
is with a healthy newborn.
Our thoughts and prayers go out to "Zach Backer"
Jerry Schafer as he recovers from bypass surgery at the heart
institute here in Spokane where Zach receives his care. We know
he's in the best of hands!
7/5/01
Zach is doing well but our attempts to regulate his Prograf level
have been futile as of late. His last 3 levels, all which were
only a few days apart, were 14, 3 and 7.1 mg/dl. We are shooting
for 9 so our average is pretty good but our accuracy is rotten.
We'll be back in 10 days from now for another blood draw. Zach's
a pretty good sport and except for the actual needle stick we
enjoy our bonding time when he and I go in for his blood draws.
We were impressed with the E-mail we got from Brad Taylor
who is Australia's longest living heart-lung recipient. What
impressed us wasn't the length of his life but the quality of
it. Brad is a very positive person who does motivational speaking,
is a runner and is making great use of the gift he has been given.
We are anxious for his book to come out and will put it on Zachary's
required reading list some day. You can visit his website at
www.believeyourdream.com
7/25/01
Here are the long awaited pictures of Zach's
new brother. Zach broke our computer for a while so we've
been a little slow getting the pictures added.
All's well at the Zagelow house. Zach's still adjusting to his
new brother but it's getting easier. The latest struggle has
been to get Zach's Prograf level right. We are shooting for 9mg/dl
but our last four tests were 3, 14, 7 &12.7 all without changing
his dosage. We're doing pretty good on average but we're not
very consistent so we've been going in every couple of weeks
for a blood draw. We're also trying to be sure to shake his Prograf
well and to give it on an empty stomach but still no consistency
so far.
8/2/01
Zach and Cole both got a clean bill of health from Dr. Garabedian.
Best of all for Cole it means no more trips to the Cardiologist.
(-: We're continuing to work on getting a portable communication
device (a maching where you push the buttons and it talks) apporved
for Zach. It means lots of letters but hopefully in a few months
we'll have one for him.
8/15/01
Zach's been doing great lately. Today Gina called me at work
to tell me Zach went and got her today to show her something.
With out any help or anything around for him to look at Zach
had spererated out the letters and spelled out the word VIDEO
with his magnetic letters he always plays with. Zach has a video
tape of his favorite shows at his Aunt Melissa's house that says
video on it in large letters. It's just amazing to me that although
he can't talk he is so bright and picks things up. I knew that
Zach new the letters but we had no idea that he would be able
to spell anything yet, especially since he's only spoken a couple
of words since the transplant.
9/9/01
Zach has been very excited to go to school each day. He's been
in his new preschool class with the bigger kids for a week now
and every day he can hardly wait to run out to the bus with his
backpack. Hopefully being around older kids will help Zach continue
improving his communication through signing and hopefully eventually
speach.
9/17/01
AN UPDATE FROM TEACHER SANDIE:
Hi guys! Zach was so excited to have me sit with him on the bus
today
when we went to the Fair! If you noticed his back pack after
he got
home today---all snacks were gone and most of his water too!!
I made
sure his hands were clean before he touched his snacks!! Also
made sure
he drank lots of water---(we even had a little water fight at
one of the
fountains...ahhhh....it felt good too!!) Zach loved all the animals...he
made signs for each one---(I could not think of the Sign for
Camel...but, we saw a Mommy Camel and her baby) He loved all
the animals
and wanted to touch them all...the most priceless thing he did----as
we
lined the kids up to take their pictures---Zach decided to give
the cow
a big kiss...(I pulled him away before he made contact....but,
hopefully
Lisa was able to get that picture!) We also saw baby chicks
hatching---and he thought this was pretty neat. Best of all as
we were
coming back to school on the bus---we passed ShopKo and he waved
and
made a Sign for Dad...(pretty sweet, eh?)---although we aren't
allowed
to eat on the bus---I noticed some snacks in Zach's back pack
and
allowed him to have something to eat---I knew he was very hungry,
thirsty and tired from all the activities of the day. I did carry
him
part of the time during the Fair---but, the majority of the time---he
walked. (So--I bet he'll be tired tonight!) Of course when our
bus
passed McDonald's---he quickly made the sign for Chicken....
10/11/01
Breakthrough Drug for Pulmonary Hypertension
A new drug is promising medical -- and perhaps financial --
relief to patients with the rare but potentially fatal condition
called pulmonary hypertension, a HealthScout News story says.
An estimated 30,000 people in the United States suffer from
the condition, a progressive narrowing of the small blood vessels
in the lungs that often leads to failure of the right side of
the heart and death. Until now, the only treatment has been a
medication that must be delivered 24 hours a day through an implanted
catheter.
The new drug, bosentan, is taken in pill form and is called
"a major breakthrough in the field" by the researcher
who directed one study that led to Food and Drug Administration
approval last month. |