Friday 2/27/00
We received a call from Angie Lorenz with Children's Miracle
Network and then a letter from Marie
Osmond & C.M.N. stating that Zach and his family have been
chosen to represent Washington State at the C.M.N.
Champions broadcast in Orlando Florida on June 3rd &
4th. It's taken the weekend but we're finally starting to get
excited about it. I think we're so used to getting bad news when
things seem to be going good that it took us a little bit to
realize this was good news only! This should be a lot of fun
and a great chance for us to help a great cause that has made
our local hospitals the kind of place where miracles like Zach
can happen.
Tuesday 2/28/00
Zach had a good Dr. visit with Dr. Lefond the neurologist who
is in charge of overseeing Zach's seizure medications. Everything
looks good. We will discontinue the Dilantin which should make
the Prograf go up so we have a blood draw scheduled for tomorrow
and another one for Monday. It will be nice to have Zach on one
less medication and nice to hopefully need less Prograf since
it is so expensive. We didn't get to see the MRI tapes but they
did locate them as we were leaving so they are on the agenda
for next time.
We got Zach itinerary for
our CMN trip and are really starting to get excited. Going to
the White house will be a fun first for all of us. Although we've
met lots of other families in our many hospital stays it will
be strange to be with such a large number of families all at
once who understand what it means to have a special needs child.
Wednesday 3/1/00
Zach had another blood draw today. He had one yesterday but because
of a miscommunication mostly on my part, Gina didn't have them
check the Prograf level but rather they did the Dilantin level
which we just discontinued anyway. Although Zach is getting good
at having blood drawn I still feel badly that I caused him to
have to get an extra blood draw.
Friday 3/3/00
Zach's Prograf level cam back a very low 5.5 (should be between
8 & 15) which scares me. Stopping the Dilantin should have
made it go up not down. So we'll get another level Monday and
then adjust his Prograf from there. All's great with Zach otherwise.
I spent most of today looking up the Ross procedure after
receiving a nice not from a lady whose husbands case is being
reviewed by Zach's transplant surgeon, Dr.
Reitz. The procedure involves replacing a damaged aortic
valve with the patients own pulmonary valve and then replacing
the less important pulmonary valve with a transplanted one. The
aortic valve keeps blood from flooding back into the powerful
left ventricle which pumps blood out of the heart to the entire
body. This valve is crucial to the circulatory process and survival.
I wasn't aware of this procedure or that Dr. Reitz was involved
in it as well. He is certainly multi-talented. Here are some
links if you would like to learn more about the Ross procedure.
I also found some information on the history of the heart-lung
bypass machine which is necessary to every open heart and heart
transplant surgery.
Saturday 3/4/00
We just got back from the Washington State B Basketball tournament.
We've taken Zach to the tournament every year but this was by
far the best since thanks to Dan Hulsizer we had tickets to a
luxury box and we were the only ones in it! It was perfect for
Zach since he could run around plus he could always see the game
without someone blocking his view. The boxes also have a nice
living room area so Zach and I could wrestle during time outs.
Clapping has been Zach's biggest form of communication lately
so he really enjoyed all the clapping. Zach clapped right along
no matter which team scored a basket.
Monday 3/6/00
I took Zach back in for another blood draw this morning. Hopefully
we'll score higher on our Prograf level this time. It was just
Zach and I this morning since Gina is watching a little boy the
same size as Zachary (Spencer). Spencer is a year younger than
Zach but he talks great and is ahead of Zach in many respects.
It reminds us how much we miss Zach talking but hopefully Spencer's
talking will rub off on Zach and help catch him up. Although
it's a little restricting sometimes it's great for Zach to finally
have a buddy to play with since his immunosuppression has caused
us to keep him so isolated. The extra money helps too.
3/9/00
Zach's Prograf level came back 10.5 (perfect). Much better than
the 5.5 we got for some reason last Friday.
It was 19 years ago today that Dr. Reitz performed the first
ever successful heart-lung transplant on Mary Gohlke at Stanford.
My how time flies. I have a list here in front of me with the
names, addresses and Emails of 120 living patients who received
heart-double lung transplants at Stanford. Hopefully I can find
the time this spring to try to get in touch with some of them
and learn more.
Sunday 3/12/00
Zach was a handful but entertaining at Mass today. He got away
once and almost made it up on the alter before I caught him.
They sang and hymn today that I've only heard a few times
since the first time I heard it; that was at my friend John's
funeral. John was a few years older than me, 23 I think and I
was 18. John was an average guy, not particularly outstanding
at anything but a really nice guy and a lot of fun to be around.
We played tennis both with and against each other in some tournaments
in the summers of 1984 and 1985. In the spring of 1986 John's
girl friend broke up with him and he was devastated. John hadn't
slept in three days and on the way home from a drinking binge
he drove his car into a concrete bridge inbuctment and died instantly.
As I looked at my beautiful wife and son and can't help but grieve
for John and the fact that he couldn't see far enough into the
future to know that there's life out there worth fighting for
and that things eventually get better if you're around to see
them. Zach's living proof of it. Rest in peace John.
"And He'll Raise You Up, On Eagles Wings, Bear you on
the breath of dawn, make you to shine like the sun, and hold
you in the palm of his hand"
Monday 3/13/00
I received an e-mail from Erin in Ohio today. Congratulations
to her sister-in-law Terri who got a new heart and lungs March
7th. We wish her luck with her recovery and with finding ways
to deal the the expense of a transplant and recovering away from
home.
Tuesday 3/14/00
Today was a great milestone for transplant patients. Sean Elliot
returned to the San Antonio Spurs. He's the first transplant
patient to play in the N.B.A. I've been a Spurs fan since way
back when the drafted David Robinson so I was thrilled with Sean
Elliot's heroics in the N.B.A. playoffs last year. As great as
that was, especially with his game winning 3 point shot, it pales
in comparison to his heroics in coming back after receiving a
kidney from his brother Noel. Way to go Sean!
Monday March 20th 2000
Zach's great grandmother Dorothy had a massive stroke last night.
She's alive but unresponsive and will probably remain that way.
Grandma has accomplished a lot in her life and has led a very
full life. She has raised 3 wonderful sons who have instilled
grandma's values in all her grand kids. We were already on her
way over to see her this weekend. I wish we would have got there
sooner.
Tuesday March 21
It seems trivial after what's been going on with Zach's great
grandma the last few days but Zach made it through an entire
meal using his fork today. He ate a whole waffle with it. He's
making progress all the time.
Sunday March 26 Bellingham WA
We've been here visiting Zach's great grandma and Uncle Dick's
family since Friday. On Friday grandma had opened her eyes and
looked right at me then reached out her hand and squeezed my
hand really hard. When my mom asked her how she was she clearly
mouthed "fine" even though with half her body paralyzed
from the stroke and the labored breathing from her congestive
heart failure it was clear that she wasn't. Several other family
members have had similar experiences as grandma used every bit
of energy she had to try to say all her goodbyes.
Zach has been fussy at times but mostly playful. He hangs onto
the bar and looks up at Grandma in the bed. Then he slides on
his back and hides under the bed and then peeks out. He also
likes hiding in Grandma's closet. I wish grandma could watch
him play but I'm glad he doesn't understand. That innocence is
one of the best things about kids.
Monday March 27 11:00 A.M.
This is our last visit to grandma. Gina immediately recognizes
the familiar whoosh of the portable oxygen pump. We slept to
that sound for a couple of months before Zach had the transplant.
They've giving Grandma morphine for the pain to try to keep her
comfortable and even though they've sat her up in bed to try
to make the breathing easier, I can hear the familiar gurgle
from the congestive heart failure. Her breathing is very labored
and her face is contorted. We pray time is short. My grandfather
was killed in an explosion nearly 60 years ago and Grandma has
waited to be with him all this time. She's been ready for years
if God would only take her. Grandma's niece Jo Ellen keeps up
her vigil but the labored breathing just hits to close to home
with what we went through with Zach. We say our last goodbyes
and start the drive home.
1:00 P.M. Heaven
Grandma just left on her second honeymoon. Somewhere in heaven
grandma is restored to her youth. (See the picture below). Grandpa
dressed in his best 1940's Sunday suit gives grandma a big hug
and spins her around. Maybe they'll go see Niagara falls or some
other honeymoon spot that's a great view from heaven but first
they have some visits to make. Riding in a brand new one horse
buggy they make the rounds to visit grandma's parents, her brother
in-law Fred Stehr, Al Wolfe and dozens of other people grandma
has missed. Grandma excitedly jabbers about all the wonderful
things she's seen since 1946 from microwaves to sky scrapers
to getting pictures of her great grandson E-mailed to her. Hugo
just listens and smiles then finally says, "I know Dorothy,
I was watching".
Wednesday March 29th
Today I spoke for a couple hours at my alma mater, Washington
State University College of Pharmacy. It was a good first time
talking about organ donation but I confirmed what I've been told
many times, I'm a little long winded. It was a two hour class
and I had enough material for about 4 hours. I hope to do this
sort of thing more in the future, I'll just have to remember
to pare it down...a lot! I think Zach's story can be very captivating
and hopefully we'll be able mold opinions and help the organ
donation shortage in the future. I received several nice E-mails
from people in the class including Laina who discussed organ
donation with her 12 year old daughter. If we can just get everyone
to discuss it with their family just once.
Our thoughts and prayers go out to Luba who was just told
she needs a heart-lung transplant. It can be a tough decision.
I hope the statistics I sent her are can be of use since I didn't
get time to use them in my lecture. In spite of continued advancement
in transplant medicine I'm sure they're not comforting. Heart-Lung
transplants continue to have the worst survival rates of all
major transplant types. (44.3% at 5 years post-transplant.) Even
though that figure sounds low, survival rates are better every
year and have improved by 10% since 1989. Technology only gets
better.
Thursday 4/6/00
Dr. Garabedian was too sick to see Zach yesterday but we still
managed to get his Prograf adjusted. His level was up over 13
so we are reducing it from 11ml (5.5mg) to 10ml (5mg) twice daily.
I expected we would have to do this before now since we stopped
the Dilantin last month. We had a fun afternoon at the park with
Zach, Gina and I after work today. I'm glad it's finally starting
to warm up so we can go to the park more. Zach loves ducks! Still
no talking for Zach but we know he wants to. When we push him
fast in the stroller, feed the ducks or lift him up to the basketball
hoop we get lots of sound but it's mostly mmmmmmmmmmmmmm! I don't
care if the first thing Zach says is *!@&$(*^@(@#$*@#$)(*$^&(!@
as long as he talks again.
I had an interesting visit with a customer in the pharmacy
whose teenage son is undergoing kidney dialysis and may eventually
need a transplant. Kidney transplants are the most common of
all transplants by far. They also have the most people waiting
for organs. Kidney's are interesting both because of the tissue
matching they have been able to do with them and also because
there is the possibility of a living donor since everybody had
two. I also thing the teenage age group has the toughest time
psychologically dealing with transplant.
This has been a record week for me with contacts form the
website. Many requests have been for transplant statistics, most
of which I find at www.unos.org.
Here is a sample of one of my contacts this week.
KATHY WRITES:
hello
my name is Kathy and i have a friend who about 6 months ago found
out
she had a lung disease, recently she found out that she will
need a lung
transplant. what i am doing is help her find locations that give
heart
transplant a list if available. she is looking for ones that
might be
closed to her family .
she is single and doesn't want to through this alone. any help
you can
give me is appreciated.
thanks, Kathy
p.s.
i think you need to add a list of transplant centers. my friend
just
found out she has to have a lung transplant. we are looking for
a list
anything in Nebraska near Lincoln,Nebraska, or Chattanooga,Tennessee.
or near Orlando ,Fla any info would be appreciated thank you
Kathy
MIKE WRITES:
Kathy, your friend is right on with wanting to:
A. Be close to family. I don't know how we'd have done it if
we
wouldn't have had our families for support.
B. Shop around for her transplant center since experience is
a huge
asset. That's why we chose Stanford for Zach's heart-lung
transplant.
Here's some data I found entirely at www.unos.org. If it's
stat's and whose
done what that you're after, that's a great place to find it.
I wasn't sure
what type of transplant your friend needs so I include HEART,
LUNGS &
HEART-LUNG transplants.
HEART & LUNGS TRANSPLANT
Shands Hospital, Gainsville Fl. 1 in 1997 and 2 in 1998
Baptist Memorial Hosp. Memphis TN 3 in 1997 and 0 in 1998
St. Louis University, St. Louis, MO 3 in 1997 and 3 in 1998
None were done in the state of Nebraska in 1997 or 1998.
LUNG TRANSPLANT
Barnes Jewish Hospital in St. Louis Mo did 57 in 1997 and
55 in 1998.
Shands Hospital in Gainsville did 27 in 1997 and 28 in 1998.
Vanderbilt University in Nashville, TN did 16 in 1997 and 20
in 1998.
Nebraska Health Syst. University Hosp. did 7 in 1997 and 2 in
1998.
HEART TRANSPLANT
Jackson Memorial in Miami Fl did 27 in 1997 and 33 in 1998.
Shands Hospital in Gainsville FL did 49 in 1997 and 40 in '98.
Tampa General in Tampa FL did 42 in '97 and 47 in '98.
Bryan LGH Memorial Center in East Lincoln NE did 5 in '97 and
7 in '98.
Vanderbilt U. in Nashville, TN did 26 in '97 and 28 in '98.
St. Thomas in Nashville, TN did 17 in '97 and 15 in '98.
Baptist Memorial in Memphis TN did 16 in '97 and 17 in '98.
Hope these facts help, like I said check out the UNOS site
and let me know
if I can help with anything else.
This data is interesting to me and I'm going to post it on
Zach's website
along with your note. Please let me know if that's not O.K. with
you. We
wish your friend luck, Mike
Friday 4/7/00
Lately there has been a lot of political wrangling over who should
set transplant policy and run the transplant system (The department
of health and human services or the United Network for Organ
Sharing) and how organs should be disseminated. Kept locally
or mandatorily shared with the sickest patients even though someone
close may have a better chance of survival. I see both sides
of the argument. The one thing we know for sure is that only
about half of potentially transplantable organs ever get donated
and if we can increase that number it will go a long ways towards
easing the argument over who should get available organs.
Sunday 4/9/00
Gina & Zach are back from Yakima and although it was only
a weekend away I'm glad their home. Zach is running around as
happy as can be to be home. I know I'm partial but he's a pretty
good looking kid!
I has a couple interesting E-mails today from Heidi an adult
heart-lung recipient. She was the fourth recipient ever at Methodist
Hospital in Indianapolis in 1993.
Also Debbie wrote about her 9 year old nephew Phillip who
had the Fontan
procedure on his heart. This procedure is to help the heart
work better in someone born without a right ventricle of the
heart like Phillip was. If anything were to go wrong he would
become a heart transplant candidate. So far Phillip is doing
well medically and is in the second grade.
Sunday 4/23/00
We had a very nice Easter at Zach's Uncle Joe & Aunt Melissa.
They had about 20 relatives over including both sets of Zach's
grandparents and about half a dozen kids who partook in an Easter
egg hunt. It was Zach's first time hunting for Easter eggs and
he did great. Gina followed him with his basket and Zach would
find the eggs and fill it up. Pretty simple stuff but a thrill
for us!
Tuesday 4/25/00
Zach gave us a pretty big scare today. Zach is a big Barney fan
but we didn't realize how dangerous that could be. Up until today
we have always kept a small TV in Zach's room. Sometimes Zach
just likes to sit on his bed and watch Barney in his room. Well
today he decided he was going to crawl up on the dresser and
put Barney on himself. There was a huge crash and Gina and I
both came running into Zach's room and found the dresser and
T.V. in a pile with Zach underneath. Although a little scared
Zach was fine but it sure scared us. Zach's only injury was when
Gina pulled the T.V. off of Zach so fast that she dropped it
and it gave Zach a bump on the head. Her adrenaline was really
going, I can understand those news stories now where mothers
pick up cars or other heavy items to rescue one of their children.
One thing is for sure, all televisions at our house are down
low now.
Thursday 4/27/00
Zach, Gina & I had a great day supporting Children's Miracle
Network. We heard from local CMN supporters including Bobby Brett,
The Gonzaga Bulldog Basketball Team and Drew Bledsoe via satellite.
Here is roughly what I said during our chance to address the
people on hand:"
Hi It's great to be here. I'm Mike Zagelow, this is my wife
Gina and our son Zach. Zach got a new heart and both lungs about
a year and a half ago.
Zach has spent a lot of time in both Deaconess and Sacred
Heart and we have surely benefited from the wonderful work done
by Children's Miracle Network. I won't go way into detail about
Zach's story since it's a pretty long one but I can say that
it was great to find out that Zach was going to be Washington's
CMN representative. We've gotten so used to getting bad news
the last couple of years that it took us a while to believe it
but now that it's finally sunk in we're really excited to make
the trip and represent such a good cause. We understand how busy
life gets and it's really admirable how all of you have given
your valuable time to such a noble cause as CMN. Thank you.
If you would like to know more about Zach's story, Children's
Miracle Network or Organ Donation you can visit Zach's website
at www.zacharyz.com. Thanks for taking the time to talk to your
families about organ donation and thank you for supporting children's
miracle network.
Sunday 4/30/2000
We continue to receive bad news about Terri, a fellow heart-double
lung recipient who is now battling a serious infection. Please
keep her in your prayers.
Sunday 5/7/00
So much has been going on lately. First there is the tragedy
of Dr. Allen. Dr. Allen was partner's with Zach's cardiologist,
Dr. Garabedian. Apparently while fishing alone Dr. Allen fell
into the water while trying to untangle a fishing line from his
propeller and died in the water of exposure. Dr. Allen saw us
through some pretty tough times while Dr. Garabedian was in Armenia
and we found him to be kind and compassionate as well as very
competent. We'll miss him but the loss to his patients, especially
to ones who have gone through major surgeries or transplants
is unbelievable. I spoke with Brian Prawdzik who Dr. Allen saw
through a heart transplant and Brian said that Dr. Allen had
said that when he dies he hopes it's on his fishing boat. Another
of life's ironies. Dr. Allen's memorial service will be at the
opera house hear in Spokane. I've never heart of a memorial that
large in this area but it makes sense with how many kids he has
influenced during his long career as a pediatric cardiologist.
He will be missed.
On a brighter note we received our tickets to Washington
D.C. with Children's Miracle Network. The book of Champions was
truly overwhelming. There are so many terrible things that can
happen to a child and to see how these kids have persevered is
amazing. Soon all these stories will be updated on the CMN
website.
Zach is doing well and although he's still not talking he
is growing fast and gradually understanding more as well. He
has really been enjoying the chance to be outside with the warm
spring weather.
I spent a couple hours tonight at www.adamvasser.com.
Adam received a heart at Stanford a little after Zach had his
transplant in 1998. Although it was difficult to see how much
Adam has endured, it is nice that they share their experience
for the benefit of families like ours.
Tuesday 5/9/00
Brooke Porter's mom was in the store today. Brooke is a young
girl here in Spokane who is waiting for a liver. Last night they
were put on alert about 11 pm and didn't find out until 6 this
morning that the donor liver wouldn't work for her. I feel for
the family and am so glad we never went through any false alarms.
I attended the memorial for Dr. Allen this morning. It brought
back a lot of difficult memories of our time in Deaconess when
Zach was on the respirator and Dr. Garabedian was gone to Armenia.
We couldn't take Zach to the service since he was scheduled for
his Synagis shot so Gina took Zach to get his shot and I went
to the service. Here is an excerpt from KXLY, a local news station
who also does the Children's Miracle Network broadcast.
Read about Tyler (the
boy in the picture)
He touched the lives of so many people, and it was no surprise
hundreds came to say good-bye.
A memorial service for Doctor Welzie Allen was held at the
Spokane Opera House today. Doctor Allen died in a boating accident
this week out by Lake Pend Orielle. You needed something as big
as the Spokane Opera House to bring together all the people touched
by Dr. Allen. In today's service, one of his daughter's said
he touched people's heart's physically and figuratively. Hundreds
poured in to say their final good-byes. And everywhere you turned,
you saw faces of children Dr. Wes Allen helped save, patients
he called his little frogs.
"I can hug my daughter today and she's around today
because of him." "When I was littler he brought me
a stuffed frog animal." They came together to look at the
snapshots of a man's life. To learn more about a doctor, a husband
and a father. And inside, the stories that went behind the pictures.
Most knew Wes Allen's role as a healer. He traveled all over
the world to help sick children with an organization called "healing
the children". It's founder read a poem from a little six
year old girl from Honduras he helped save. Dr. Wes had a long
list of accomplishments. He helped set up a new system of air
ambulance service, and a neonatal intensive care unit. To his
family, Wes Allen brought love and laughter as a husband, and
a father of three girls. But after the stories, the tears and
the laughter, it was time to say good-bye.
"Healing the Children can only add one thing and that
is, Doctor Allen...well done my friend, well done." Doctor
Allen also played a key role in starting the Children's Miracle
Network locally. In the service it was announced, this year's
CMN Champion's broadcast will be held in honor of Doctor Allen.
KXLY NEWS 4 Spokane
Wednesday 5/10/00
I've had several questions lately on how Zach's therapy is going.
Quite well from my perspective. Several times a week a teacher
or therapist from district 81 here in Spokane comes to the house
and works with Zach. Although Zach is still not talking he does
understand well (sometimes he listens and sometimes he doesn't
but I think that's true of any 3 year old). Typically most of
the sessions are spent working on trying to develop communication,
for instance Sandy (that's the teacher who comes the most) will
give him a choice of several cards to choose from with items
drawn on them that Zach can recognize such as clothes, socks
and shoes, scissors, crayons, cups, etc. Zach chooses a card
and then they work on what ever is on the card. For instance
if Zach chooses the closes with the card then Zach and the teacher
will work on Zach dressing himself. Sandy is very patient and
Zach is making progress, some days are better and some days Zach
is less cooperative but overall we've been very happy with the
progress Zach has made and are VERY comfortable with the teachers
and the job they do, which is nice since they're in our home
so much. It's been about a year and 1/2 since Zach last talked
besides saying mom and mouthing cut a couple of times when working
with scissors. After all we've been through with Zach it hardly
bothers us. Every challenge Zach faces just makes us love him
more.
Just 3 weeks until our big trip with CMN. We're very excited.
Thankfully it sounds like Brian(heart) is past his rejection
but Adam(heart) in SanFrancisco is dealing with it and Terri
(heart-lung) from Ohio is trying to recover from a stroke suffered
not long after her transplant. Transplants aren't for wimps that's
for sure.
Monday 5/15/00
Zach was in for one of his many blood draws today. After two
tries they couldn't get a vein and Zach is getting strong enough
that Gina can't hold him for long anymore. They'll go back and
try again tomorrow. The numerous blood draws to check medication
levels are a pain for every transplant patient but for the one's
that don't yet understand that they're for their own good they
can be a real terror.
Sunday 5/21/00
Zach's appointment went well with Dr. Garabedian last week. Zach's
lungs sound clear and his blood pressure was good. Also the echo
looked o.k. Zach's creatinine continues to creep up. That is
the measure of his kidney function. One of the problems with
immunosuppressants like Prograf is that it can be nephrotoxic
(toxic to the kidneys). Zach's Prograf was a little high so we're
going to reduce his dose from 5 mg twice daily to 4.75mg twice
daily. Hopefully this will be a little easier on the kidneys.
Question: One of Zach's medications
is Magnesium. Magnesium tastes bad and often causes diarrhea.
Why does Zach need to take it?
Answer: Magnesium is an essential nutrient required for more
than 300 enzyme reactions that affect critical body functions,
including cardiovascular, metabolic and musculoskeletal systems.
Despite its presence in many whole foods, magnesium levels may
be too low in 50 to 75% of the U.S.* population because of the
preponderance of highly processed foods that make up the average
American diet. Deficiency can be caused by a number of prescription
drugs, chronic alcoholism, chronic illness. Magnesium deficiency
is associated with cardiovascular disease, diabetes, osteoporosis
and PMS as well as other conditions. Severe deficiencies has
been associated with arrhythmia and sudden death. 99% of the
body's magnesium is stored in the cells and in bone. By the time
blood magnesium levels are obviously low the deficiency is often
advanced. Zach's main immunosuppressant, Prograf, can deplete
magnesium and the steroids he must take to help prevent rejection
of the lungs can cause osteoporosis that magnesium can help prevent.
*Pharm/alert Tips sponsored by Blaine Pharmaceuticals.
Zach had a great time today at Max Axtell's (the son of one
of my pharmacists) fourth birthday party. Zach ran around with
other kids and played and jumped on the trampoline. That's the
kind of day that makes the whole transplant thing worthwhile.
Here's a letter from the mother of one of Dr. Allen's
patients.
Mike and Gina,
Your records of your experiences are painfully familiar. Our
son was born
with 7 heart defects as well as no spleen. Dr. Allen said that
Tyler's
heart had the most defects and complications of any kid he's
ever seen in
30 yrs. of cardiology.....never a good thing to hear. Early on,
a transplant
consideration was thrown out because of his compromised immune
system.
Three surgeries and eight years later, heart-lung transplant
will eventually
be our next step (we are told). Dr. Allen was Tyler's cardiologist.
We
feel so much about him like you feel about Dr. G. He was like
family,
having held our hands through the darkest days of our lives.
We feel so
lost without him. Dr. G has seen our son when Dr. Allen was out
of town,
and we are scheduled to see him next month. We are certain he
will be
awesome. The picture on your web-site of Dr. Allen is with our
son after
his second surgery.
Reading about your "roller-coaster ride" brings back
the "he's going to
live", "he's going to die" process and everything
in between. Our first 4
years with Tyler were similar to your experience of ER rooms
(un-equipped
to deal with the complexity of Ty's case), to the surprises at
routine appt.s,
hospital stays, infection fears.....my heart immediately goes
out to your wife.
Our past four years have been miraculously smooth.....which we
have grown
to LOVE, but are always wondering what lurks around the corner.
Thank you for all the work you have invested in this web-site.
My husband
is out of town now, but I know he will enjoy reading your story.
We will
definitely keep your Zach in our prayers.
Thanks again,
Amy Jo LeLaCheur
Monday May 29th 11:00 P.M.
We're ready and all packed and very excited. We leave for the
airport at 5:30 A.M. Pacific time for Washington D.C. Meds, stroller,
tickets, suitcases, check, check, check!
Dr. Garabedian has been working hard to have Zach's Prograf
level adjusted before we go. We reduced it a little at our last
visit and our follow up level last week was over 17! They like
the level to be about 9. Because of the holiday weekend we had
to go get a level in the E.R. and somehow they messed it up so
we were in for another lab this morning. While the draw went
good again today the level came back at 12.6 so still too high.
We're going to reduce the dose again and get another level as
soon as we get back but at least we won't have to try to find
away to get a level on our trip. We'll be sure to take lots of
pictures so check in next week. We'll be on ABC on June 3rd and
4th. See you then!
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