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3/22/03
As the boys get bigger it gets harder to find the time to update
Zach's website. I'm just going to hit the recent high points
to get caught up.
April - Zach and Cole had a great time at Disney Land and
an even better time at Lego Land on our vacation to California.
The rides at Disney were a little dark and scary at this age
for the boys. We stayed at Carlsbad which is right in between
Los Angeles and San Diego on the southern California coast. The
beach and the flower fields were hits but Lego Land was the best
although we did enjoy it at Disney land, especially when Zach
called the Pirates of the Caribbean the Pirates of the GARABEDIAN!
May- Zach had seven fillings and a tooth pulled. Unfortunately
all Zach's medications are in a sugar based syrup that can lead
to tooth decay. Hopefully now that he is old enough to brush
his teeth, this will be it for cavities for a while. Because
Zach is so small and a little afraid of dental work we had to
take him to the hospital day surgery so he could be sedated during
the extraction and fillings. Dr. Toillion did the work and was
very good with Zach. Finally Zach doesn't complain of having
a cheek ache anymore.
On May 13th Dr. Ali Olyaei, Assistant Professor of Medicine
at Oregon Health Sciences University gave a talk to the Spokane
Pharmacist Association that I really enjoyed. I was able to find
a very generous sponsor in Stephanie from Roche Laboratories
who paid for Dr. Olyaei to come speak to our group. It was the
first live C.E. that I can remember us having in Spokane related
to transplant medicine. It was interesting to here some of the
potential future breakthroughs including the possibility of inhaled
immunosuppressants. He also answered some of my questions on
Cellcept vs azathioprine for Zach's medications. The increased
number of cancer cases in small children will keep us using azathioprine
(exactly what Stanford had told me but it was great to have it
confirmed by a second knowledgeable source).
We've had a little trouble getting Zach's Prograf level correct
again. We've gone back to 7 mg per day since his last two levels
have been 5 & 7 mg/ld when our target is nine. Zach's been
brave but he is starting to regress a little and be more afraid
of the needle. Hopefully Tuesday's blood draw will be the last
for a while... think 9!
Zach spent the day in kindergarten with me Friday. He was
very excited to go but once he got there it took him a lot of
tears and resistance before he was ready for the increase in
structure and direction from preschool. We'll see how next Friday
goes.
Gina's update: Zach continues to be very helpful around the
house, I (Gina) woke up one morning and was starting to get breakfast
ready for the boys and noticed a bowl on the counter with two
eggs in them and no shells, it turns out when I asked Zach if
he was the responsible party he replied "yes mom, I made
eggs for my brother", Zach adores his little brother and
is constantly watching out for him and tells me all the time,"I
have a little brother named Cole, huh mom" Zach also is
showing us how smart he is and that he has a wonderful memory,
things that we don't even think of or that they are paying any
attention to he just points things out to us and is always surprising
us. It makes us think as parents that Everything that we say
or do or how we react to any situation has a huge effect on kids
and they are much more aware than we think.
8/15/03
I can't believe it's been this long since I've updated Zach's
website. We've had a busy summer and it's hard to give up family
time to get to the computer. Zach continues to do great and every
day his speech improves a lot and his behavior improves a little
and altogether he's making great progress and is ready to start
kindergarten. That brings me to the biggest change in Zach and
our lives. I've taken a promotion at work to a regional position
and we will be moving to Madison Wisconsin, actually more specifically
Edgerton Wisconsin. Edgerton is a little town of about 5000 people
1/2 hour south of Madison. It was a huge decision for our family
because in addition to leaving friends, family, coworkers, teachers
and schools we're familiar with, it also means we have to change
doctors for Zach. We see Dr. Garabedian on Tuesday so we will
get a chance to say our goodbyes and to see everyone in the office
but that will be very sad for us after all we've been through
together with Zach.
The good part is we are very excited about Zach's new doctor
in Milwaukee, Dr. Tom Rice. The Children's Hospital there has
an actual heart and lung transplant program so we may be able
to get some care that previously we could only get at Stanford.
As Zach gets older his lungs will be as great or greater concern
than his heart so having a pulmonologist manage Zach's care should
be a plus. We also are very excited about the school system in
Wisconsin. Although taxes are much higher, the class sizes will
be worth it for us, especially with Zach.
One highlight of our summer I should mention was Zach hitting
the first ball at the Zak classic golf tournament sponsored by
Zak designs here in Spokane. Zach did a great job in the morning
hitting the first ball. He has a little help from his Dad but
he gave it a great effort and made a good hit. Children's Miracle
Network has been a cause we've really enjoyed being involved
with.
The start of Kindergarten is not far away. Zach and I talk
about it every day.
10/31/03 2:30 PM
Well it looks like we won't make it home in time for Zach to
wear his Spider man costume but we don't even mind. Zach and
I and his Thomas bear (as in Thomas the Train) are currently
riding in an Amtrak observation car just past Glenwood Springs
Colorado through beautiful Glenwood river along the Colorado
river. How we go here is a lot like everything else in Zach's
life has been. Every time something that seems bad happens it
leads to something good. This is some of the most beautiful scenery
in the world and Zach and I are really enjoying ourselves and
the view and especially our time together. How we got to be here
is a series of adventures that I've been too busy to update in
the website lately but I'll try to get Zach's recent history
updated today.
First - Where are we headed on the train?
We're on our way back to our new home in Edgerton Wisconsin.
I've taken a promotion to a regional job that I've wanted for
a long time but it meant a lot of changes for the family and
a lot of changes for Zach. Zach has a new Dr. (Dr. Tom Rice)
managing his care in Milwaukee and we had to say goodbye to our
friend and hero Dr. H. Garabedian. Dr. Rice is a Pulmonologist
and Children's Hospital in Milwaukee does have a transplant center
so in many ways this should be better for Zach. The school system
in Wisconsin has been phenomenal. The class sizes are very small
which has made Zach's transition into Kindergarten much smoother.
Ms. McChain and the IEP team have been great and Zach has made
lot's of friends and is getting his routine down as a main stream
Kindergartner.
The small town of Edgerton is about ½ hour from my office
in Madison but many of the stores I visit are in Illinois so
the location works well for us. The population is about 5000
which isn't quite as small as we wanted but it still has the
homey feel of a little town. We're only a couple of houses from
being in rolling corn and tobacco fields sprinkled with trees.
It's very beautiful country in southern Wisconsin. Zach's favorite
apparel is now his green "Junior Cheese Head" shirt
(he's wearing it today). Gina (Zach's mom) is the social butterfly
as always and already has got to know several of the other moms
in our neighborhood.
Where are we coming from on the train?
We're returning from Zach's annual transplant visit at Stanford.
We flew out two weeks ago today from Chicago to San Francisco
for Zach's regular visit. Because of our recent move we decided
to do this visit on the cheap and just Zach and traveled to Stanford,
we rented the smallest economy car and stayed in the cheapest
hotel. That's the great thing about it being just the two of
us is Zach gets excited about staying in any room, even at the
Glass Slipper Inn.
Saturday - We went to the Washington State VS Stanford game.
Go Cougs!
Sunday - We traveled to train town by Sonoma and then visited
the Golden Gate Bridge and went for a hike both on the bridge
and on the hill above the bridge. What a view.
Monday - Zach had his blood draw and x-rays. When then drove
out to Santa Cruz, went to the beach and blew $10 on video games
at the arcade. Zach was asleep before we completed the drive
back to the glass slipper.
Tuesday - Zach had a CT scan, we attempted to do his pulmonary
function tests (with very little cooperation!) and we saw Dr.
Conrad in clinic. Tuesday night Zach and I went bowling. They
put the racks up so there were no gutter balls and Zach bowled
an 80…we don't count scratches when he goes over the line!
Wednesday - Things went terribly in that the Dr.'s felt there
was rejection or obliterative bronchiolitis. The CT scan had
some cloudiness that made it necessary to go through with the
bronchoscopy we were hoping to avoid. Wednesday we had a nice
visit with our friends George, Margaret, Bob, Katie, Dave and
Jessica. It's always great to see friends, especially when we're
going through a scary stretch.
Thursday - I admitted I gave Zach a drink of milk six hours before
the procedure so they pushed our procedure back later. I think
since our test was scheduled last minute that we were probably
overbooked but I was still mad at myself for giving them an excuse
to move us back. I wish I could remember the name of the Dr.
who gave Zach his anesthesia. She spent time talking to both
Zach and I and was a tremendous comfort. Because to the concerns
about the rejection I really had a sense of impending doom and
was having a hard time keeping my emotions in check.
Things went from bad to worse when getting the lung sample they
accidentally punctured a whole in Zach's lung and his lung collapsed.
They were able to get Zach stabilized fine but the lung continued
to leak and he required a chest tube to help drain the air from
the chest cavity. This was when we found out we we're going to
be in Wisconsin Friday night.
Saturday - Zach had been in pain much of the last two days. We
finally were moved out of ICU but he continues to need morphine
intermittently. I think the pain was more from the chest tube
than from any problems with the lung. At 8:30 things turned around.
We got a call from Dr. Conrad who told us that the tissue samples
came back and showed no signs of rejection. It was great news,
we were so relieved!
The rest of the week consisted of gradually, slooooow recovery
until the lung finally stopped leaking, the chest tube came out,
the x-ray looked good and we got to leave. While all is well
with Zach we did change a few meds to make sure the immune-suppressants
were weight appropriate. To be safe the Dr.'s decided we should
not fly because of the risk to the newly healed lung during rapid
pressure changes. I wish I could remember the names of all the
new Zach Backers we've met, all the Doctor's and nurses never
get the credit they deserve. We had a nice visit and ride with
my Aunt Becky and Uncle John from Ohio who took us to the train
station and here we are! On the train heading back to Wisconsin,
no current signs of rejection (knock on wood) and ready to resume
our new life. Happy Halloween!
11/3/03
Gina's Turn!
Today is Monday, November 3rd, and I have just finished reading
Mikes update on Zach. It seems that things are a little more
emotional for the Moms because I just don't quite remember it
being so fast and simple.
I was OK with the fact that it would be economically wiser for
us to just send Mike and Zach on this trip, but what I wasn't
prepared for was the one week turning into two weeks . Mike was
right in that fact that I have met a lot of wonderful people
here, but it could not fill the void of me not being able to
be with my son during this episode in the hospital, all I could
think about was if I never see my son alive again I would never
forgive myself for not being with Zach. I know that Zach is doing
great and that they are home safely now but, what you hear as
a mother is totally different than what the reality is whether
it be denial (which is where I have been plenty of times) or
more dramatic than it actually is, especially when you are not
there. I thank God I have my Family because we got Zach on that
prayer chain and family is what kept me going with all their
words of encouragement and prayers. What I have failed to mention
is that Cole our 2-yr old son was my rock for those two-weeks
while Mike and Zach were gone, he is what kept me up and going
(not to mention Moms must shop when they are bored and depressed)
and I'm sure that he loved having me to himself.
I am to say the least very happy and grateful to have Zach and
Mike back home with us because things just weren't the same,
and Cole really looks forward to seeing his brother get off that
School bus when it drives by us every-day. We are enjoying our
new School tremendously and I am really liking all the new Moms
that I have met, every-body seems to have kids that same age
of both Zach and Cole so we will fit right in here in Edgerton.
11/4/03
Something else that really seems strange to me is that Zach's
former pumonologist at Stanford, Dr. James Theodore has passed
away from cancer. Dr. Theodore was our initial contact at Stanford
and is the Dr. who took us through the pre and post transplant
care. It's strange to think of all the people who have worried
so much about Zach but have left this world before him. Life's
short and we need to appreciate it is the lesson that can't be
learned. We're reminded over and over how short life is but still
we forget and get so busy with our daily lives that we forget
to enjoy our time here. Farewell Dr. Theodore may you help as
many in the next life as you did in the last.
11/27/03
Back on November 8th Zach's 5 year transplant anniversary passed
without fanfare. We had a family dinner at T.G.I. Fridays in
Madison, one of Zach's favorite restaurants.
Since Zach is still a little shy at Sunday scholl (and not
always well behaved) I always accompany him to his Sunday school
class. Last Sunday because of Thanksgiving we has a discussion
of what we are thankful for and Zach said "My New Lungs".
This was a big surprise since we didn't know that he understood
that transplant meant he had gotten new lungs. It was the first
indication he is starting to understand organ transplant and
I'm sure a precursor of difficult questions to come as his awareness
increases.
Zach is learning about 911 in Kindergarten so like a lot of
kids he tried it out last week. I'm glad the Edgerton police
department is so understanding!
4/25/04
A can't believe how long it's been since I've updated Zach's
website. I need to start doing better. First of all Zach has
made tremendous progress in so many areas. His writing is finally
catching up with his reading. His latest thing is Geography.
He will look at the map for hours. He wants to go to Madagascar
and Turkey and lots of other places that most Kindergartner's
don't know about.
Zach has been doing Karate. It was quite a struggle at first.
For weeks I took him every Monday. I would leave work easy and
drive 50 miles to take Zach to Karate and he'd just want to watch.
Finally thanks to one of his fellow Kindergartners, Kyle Hamilton,
he was able to get up the courage to go out on the mat with Kyle
and ever since then he's done great. On Monday he gets his yellow
belt and we are very proud of him.
Zach's been going to Sunday school and today he went by himself
for the first time. He was much braver and interactive than when
we started. At first I had to go to Sunday school with him and
he's finally gotten the courage to go on his own. I know it's
sinking in a little since last week I was traveling as usual
and I was driving though a bad rain storm with thunder and lightening.
Gina called on my cell phone to tell me that Zach told her they
needed to pray for Daddy. It about melted my heart.
Zach's brother Cole, while much younger than Zach, has never
had Zach's struggles. Everything comes much easier for Cole so
on many things they are very close in strength and ability. The
two boys are starting to become very close and I look forward
to seeing their relationship develop more in the years to come.
One of the biggest changes in Zach is how polite and well
mannered he has become. Gina and I were very concerned with how
hard it was to discipline Zach when he was little due to his
illnesses but we are very proud of how well behaved he has become.
Hopefully some of Zach's behavior will rub off on his 2 year
old brother!
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