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THE
TRANSPLANT LIST
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Wednesday 8/12/98
I actually wrote this section much later than the 12th of August.
It took me a while to compose myself and get my thoughts together
about this day. With all the milestones of surgeries, admissions
and discharges this is the date that always sticks in my head.
August 12th 1998. What we thought would be a routine visit ended
in tears in Dr. Garabedian’s office. The condition of Zachary’s
heart was much worse and declining. This was the day that we
learned that Zach would need a heart and lung transplant. Even
days later I'm still shocked by the abruptness of it all. After
taking us into his office and closing the door Dr. Garabedian
just said it. I know he's had to give parents terrible news more
than once and that it must be difficult for him. I can see how
just getting to the point would become a necessity for someone
who cares about these kids so much. No lead in, no small talk,
just "Zach’s only chance for survival is a heart and
lung transplant." It was hard to think about the important
steps ahead of us and taking care of all the pre-authorization
required by the insurance company and with the transplant people
down at Stanford University. Since Dr. Garabedian was pretty
sure Zach needed both heart AND lungs he felt like Stanford was
the best place for us to go. All I could think about was taking
Zach to the park and feeding the ducks (his favorite thing in
the world to do.) On Friday Dr. Garabedian stopped at Shopko
and we sat down in my office and only then could I finally think
and discuss the situation rationally.
Tuesday 8/18/98
I often feel as though my entire life had been preparing me for
this time. Every sport, club or activity, every relationship,
every painful or difficult experience, every triumph or success
every class, everything I've learned as a pharmacist, places
I've been (including the bay area) and everyone I've ever met
have all been for one purpose, that I may be better prepared
to help my son through this time, whatever the outcome.
Philippians 4, 6-7
Dismiss all anxiety from your minds. Present your needs to
God in every form of prayer and in petitions full of gratitude.
Then God's own peace, which is beyond all understanding, will
stand guard over your hearts and minds in Christ Jesus.
Thursday 9/3/98
Zach had one of his fainting episodes this morning. Normally
when he gets upset if we take him outside he comes right out
of it. Well this time he didn't. I only had to give him two breaths
through his mouth and nose before he started up breathing again
but it was pretty scary. We told 911 not to send an ambulance
because he came out of it so fast but we did take him down to
the E.R. to get checked out. He was happy and playing even on
the drive down. The Dr. at the E.R. wanted to take some X-rays
but I told him no. Zach’s oxygenation was good and we had
an appointment scheduled with Dr. Garabedian for in the morning.
We already know he needs a heart-lung transplant, Zachary’s
time is too precious to have him waiting around the hospital
for an emergency room Dr. to play amateur cardiologist. Apparently
someone agreed with me because we met with very little resistance
and soon we were on our way home. Every set of eyes on the E.R.
staff seems to be on us as we leave.
Friday 9/4/98
Dr. Garabedian discussed our situation with us. It looks like
the Flolan (spelling?) IV won't be and option. He had one little
girl who wore a little backpack with a continuous IV while waiting
for a heart transplant. The drug brings down the pulmonary pressure
but it has to be continuous. If interrupted the patient dies.
Also it reduces cardiac output which is why it wouldn't work
for Zach. His cardiac output is compromised already. The decision
is to give Zach diazepam just as needed. If we can keep him from
getting upset then his lungs want close off and prevent him from
breathing. This is what happens during the fainting episodes.
My sister Julie’s rehearsal dinner for her wedding is on
a boat tonight on lake Coeurd A'lene but we decided not to attend
because we don't want Zach to be so far from emergency services.
Although we hate to miss out on what will undoubtedly be a great
family memory, if something happened with Zach.....well enough
said.
Saturday 9/5/98
Julie and Tom’s wedding went well.
It was nice for Zach to see all the relatives who have been worrying
about him. It was hard to have Zach on display. Everyone wants
to hold or touch him and the risk of infection, especially anything
respiratory, is so dangerous to him. The church was hot and we
took Zach out of the service. A few pictures isn't worth making
Zach hot and upset. I hope everyone understands. I took Zach
home early with Joe and Melissa. Gina needs and deserves more
times like this where she can stay out and have fun.
Friday 9/11/98
We continue to go to the park every day. The duck
pond is Zach’s favorite place on earth. He even can
recognize two very distinct ducks by site and can say their names.
A brown one Gina calls Merle and a white one we call Dom which
is short for domestic. The cooler air reminds me that fall is
coming. I wish summer would last longer so we can keep coming
to the park. I guess it won't matter if we have to move to Reno
or if Gina and Zach have to move to California.
Friday 9/18/98 2:00 AM
Well this was the worst day yet. I thought August 12th when we
found out Zach needed a heart & lung transplant was the worst
but tonight Zach had one of his episodes just as Gina was getting
ready to give him some diazepam because he was fussy. Zach got
mad and fainted. I was asleep in the basement when Melissa ran
down stairs and told me Zach wasn't breathing. I ran upstairs
and put Zach on the floor and started giving him breaths through
his mouth and nose while Gina called 911. After eight or ten
breaths he finally started breathing on his own but it was only
in widely spaced labored wheezes. It took only a few minutes
for the paramedics to arrive but it seemed like forever. They
put an oxygen mask over Zach’s face which he is deathly
afraid of. In this case we have no choice because he needs the
oxygen so badly. Two paramedics work on Zach while I argue in
vain in my underwear to try to get the eight firemen out of my
bedroom. They just can't seem to grasp the idea that getting
Zach frightened or upset can cause him to stop breathing. I also
can't seem to get them to understand that eight firemen in our
bedroom at 3 a.m. can be frightening to a child. One fireman
with a big stomach hanging over his belt is especially irritating.
He won't turn off his really loud radio so finally I grab it
and hand it to another fireman who is standing out in the hallway
which immediately made his macho b.s. even worse. I'm grateful
for the paramedics and their quick response but I wish they would
have let the firemen sleep.
3:00 AM
I got to the hospital in the car shortly after the ambulance
arrived. The receptionist chased after me when I wouldn't wait
in the lobby. I told her I'm going to see my son and she can
come with me if she likes. I kept walking, she followed.
3:30 AM
I struggled to contain my emotions while relating everything
to Dr. Garabedian on the phone. He's the only one that understands
whole situation. I'm frustrated with the E.R. doctors but it
is difficult for them to treat Zach with such complicated heart
problems that they are suddenly introduced to with no warning.
Dr. Garabedian is set to fly out to Italy early in the morning
but he said he would be right down anyway. Once Dr. Garabedian
showed up he had Zach sedated and once he was asleep we sat down
in Dr. Mellema’s office with Dr. Mellema, Dr. Garabedian,
Gina and myself. We talked for more than an hour and I couldn't
seem to get my eyes to stop watering for most of it. All I could
think about was how much I've always wanted a son. Dr. Garabedian
tells us the situation looks bad. He feels that Zach’s next
episode may be his last. We discuss options, which are few. There
are some new drugs out but if we try them we may not be able
to get Zach back off of them or even be able to transport him
for a potential transplant. We discuss at what point we are going
to call it quits if Zach doesn't respond and we discuss the possibility
that Zach may have already suffered brain damage. We will just
have to wait. I sat down with Joe and Melissa (Melissa is Gina's
sister and is very close to Zach and Joe is Melissa's husband
and my buddy from pharmacy school) to explain the situation and
they didn't take it much better than I did. Dr. Garabedian is
very concerned that Gina may be in denial as she still had shown
little emotion. If we do loose Zach we both want to be sure that
Gina will be o.k.
10:00 AM
Gina and I have to take turns sleeping and it's my turn. I've
been asleep about 3 hours when Gina calls. Zach’s awake
and he wants a toothbrush! Zach has always liked chewing on a
new toothbrush, I guess it's kind of like a pacifier for him.
Feeling tired but relieved I go to Shopko and pick up a toothbrush
and more medication for Zach. He will be on a diuretic, one baby
aspirin a day and REGULAR diazepam dosages every 6 hours in addition
to his atenolol. By early afternoon we're home. We decide to
put doing our projects and getting the house sold or rented out
on the back burner. All available time will be spent with Zach
until we can get him down to Stanford.
Friday 10/2/98
we're all packed and ready to go. We met at Lincoln Heights Pizza
with a few family and friends. Zach is in rare form. There are
so many games, kids and excitement. We take turns watching him
while he plays, throws balls and even walks a little. On this
day it's hard to believe there is a problem at all.
Saturday 10/3/98 10:00 AM
Zach’s fussy today. I worry that all of last nights excitement
might have been too much for him. After his nap we went to the
park for one last time to feed the ducks. Normally Zach loves
to feed the ducks but today he is tired and uninterested. We
leave to go home and he's asleep by the time we turn the first
corner.
3:30 PM
Zach’s got a fever of 102 se we call Pediatric’s After
Hours. After explaining Zach’s situation they page Dr. Garabedian.
Dr. G. is worried about infection. We hope and pray that it's
not a respiratory infection. The time Zach had pneumonia we were
in the hospital for six weeks. Dr. Garabedian instructs us to
go in to Pediatric's. After Hours for a blood draw.
4:30 PM
Because of Zach’s pulmonary
hypertension (high blood pressure in the lungs) when he gets
mad he is at high risk of passing out, stopping breathing or
arresting so he must be sedated for the blood draw. Because they
can't sedate him there at the clinic, they send us over to Sacred
Heart E.R.
8:00 PM
Here we are again in the intensive care unit. Zach had a temperature
of 103 and the E.R. doctor saw him briefly and admitted him.
Dr. Brutocao is on. We know all the pediatric ICU doctors. Zach’s
lungs sound clear so hopefully it's nothing respiratory. They
give Zach Versed to ease his anxiety and try to start an IV.
Zach always hates this. His veins are so small that the nurses
have to try several times before they finally get his line started
and do a blood draw to send upstairs for cultures. After the
blood draw one of the nurses slips before taping the line down
and it comes out. It takes another 45 minutes of poking and prodding
to get the line restarted so they can give him I.V. antibiotics.
The nurse feels terrible and so do we.
Sunday 10/4/98 7:00 AM
We were finally able to take Zach home last night. Now we're
back at the hospital getting another round of antibiotics before
we go to the airport. They left his I.V. line in when we took
him home last night so that we could get another dose this morning.
it's been six weeks since the decision was made to try to get
Zach on the transplant list. The flight was uneventful although
I wish we wouldn't have given Zach a second dose of chloral hydrate
when he woke up on the plane. We arrived very late and by the
time we were ready for bed, Zach's chloral hydrate was finally
wearing off and he wanted to play.
Monday 10/5/98 8:00 AM
We drove from where we were staying in Redwood City with our
new friends the Staffords about an hour north to San Francisco
to see Dr. Phillip Moore at U.C.S.F.
Dr. Moore is a pediatric cardiologist who has worked with similar
patients with double chambered left ventricles and has had some
limited success with surgical resection of the muscle within
the left ventricle.
After a very detailed echocardiogram (picture of the inner
workings of the heart) we finally meet with Dr. Moore. After
reviewing the echo Dr. Moore concludes that surgical intervention
will not be an option. Dr. Moore seems surprised at how well
we took the news and comments that we must be used to getting
bad news. I think we're both relieved that we won't be forced
to make the decision on whether or not to risk surgery. Dr. Moore
called Spokane and found out the culture’s were all negative
so Zach didn't need any more antibiotics.
5:00 PM
We arrive at Stanford Children’s Hospital after a 1&1/2
hour drive. The beautiful fountains, low cut counters so that
children can see over them and the kid friendly décor
are all in stark contrast to the dingy 1950’s chemistry
building feel of U.C.S.F. Every waiting room has interactive
murals where kids can open doors, push buttons to turn lights
on, etc. I have been maintaining Zach’s I.V. line with heparin
in case they need it but the line’s no good. Only a small
amount of blood can be retrieved from it. We decide to go ahead
and have them sedate Zach again and put in a new line to draw
the blood. It only takes them about 15 minutes to get the line
in to draw the blood. The easiest blood draw ever!
Tuesday 10/6/98 10:00 AM
We meet with Martha Russell the social worker for the heart-lung
transplant cases. She is cordial with a round face. It doesn’t
take her long to see that we understand Zach’s medical situation
very well and that Zach comes from a stable home. The second
half of her mission is to walk us through what happens from now
up through the transplant and rehabilitation stage. This takes
longer, mostly because I ask so many questions. it's obvious
that we’ve only hit the tip of the iceberg as far as cost
goes. Immunosuppressants (the drugs to keep Zach from rejecting
the heart and lungs) are $15,000 per year before any insurance
reimbursement. The mandatory apartment where patients live during
the first four to six months after transplant is determined by
income but can run as high as $1000 per month.
After lunch in the cafeteria we go to x-ray. They can't find
the orders so it turns into a long wait. There are several post
transplant patients of various organs in the waiting room. It
seems very strange being the minority by having all of my original
organs. Two pictures and we're done for the day. We get to skip
the blood draw since we did that yesterday.
Wednesday 10/7/98 10:00 AM
We do to San Jose to look at some different cars for Gina. If
Gina and Zach have to stay in California the plan will be to
buy Gina a car and then I’ll sell the van when I get home.
Note: You can't buy much of a car these days for $3000. L
1:30
We have lunch in the children’s hospital before going over
to the main hospital to meet the transplant team. Zachary’s
aunt Melissa who is very close to Zachary must be nervous. She
spills TWO pops during lunch.
2:00
While waiting for our main transplant
exam we busy ourselves by filling out organ donor cards. Zachary’s
Aunt Samantha doesn’t want one. "I'm going to be buried
just like God made me." It makes me realize how far we have
to go for the education of organ donation to catch up with the
science of organ transplantation.
3:00
We finally get to meet the Lisa the transplant coordinator and
be examined by the doctors. First we meet with a young Asian
doctor and then after a long wait finally we meet with the head
of the department, Dr. Theodore. He looks to be 50ish with white
hair and large clumsy hands (he's not the surgeon). He is obviously
very in charge. The three young women doctors with him are eager
to please him with proper responses to his questions, the majority
of which I know the answer to. His touch of arrogance, directed
mostly towards his students, doesn’t bother me at all. He
obviously knows his business and that’s what matters. Everything
looks fine that Zach will be listed.
Thursday 10/8/98
We seem to have everything arranged. Gina and Zach will stay
at Willie and Sally Stewarts’ house in Portola Valley and
they will hopefully have the Staffords as the beginning of a
support network down here. I will put in for a transfer to Reno
so that we can all live together. The air ambulance from Reno
in the event a donor is found is already arranged with the insurance
company.
2:00
The wheels just fell off the cart. I called Reno in search of
a pediatric cardiologist and I found a good one but they discouraged
me from transferring because the HIGH ALTITUDE will severely
worsen Zach’s pulmonary hypertension. After hurried calls
to Lisa the transplant coordinator and to Dr. Garabedian we start
trying to deal with the thought of trying to go through the entire
process separately. I will go home to Spokane on Monday and Gina
and Zach will live in California. Gina’s getting a bit of
a support structure built up here with George and Margaret and
their children, especially Kate, but we're both sick at the thought
of not being able to go through this together. On Monday I will
start looking into other locations I could possibly transfer
too with Shopko that might be close enough for us to live together
on the transplant list without being at too high of an altitude.
Friday 10/9/98
We are set to leave in 15 minutes to take Gina’s sisters
to the airport and to go try to buy a car for Gina. Lisa calls
from Stanford. She’s got great news for us. She confirms
that if the labs come back o.k. that all is a go with Zachary
and that the doctors have agreed to stretch the maximum air ambulance
flight time from call to arrival for transplant from 2 hours
to 3-4 hours. They have also talked with Dr. Garabedian and have
agreed to have him do all the pre-transplant examinations (these
occur every 3 months) and they will watch via video conference.
This way we won't have to risk flying Zach down every three months.
Needless to say we are elated. This means we can fly home together
and live as a family. After a few quick calls to Dr. Garabedian,
Brad Dettmann (my District Team Leader with Shopko), Kate (George
and Margaret’s daughter who works for United and can work
miracles with ticket changes) and Med Star (the air ambulance
service out of Spokane) we are off to the airport with a load
off of our minds.
After dropping off the girls we have lots of time since we
don't have to go car shopping. We visit the Golden Gate Bridge,
drive down Lombard Street and go to the pier. Zach points out
the boats for us.
Saturday 10/10/98
My friend Willie gets us free tickets to the Stanford-Oregon
State game. Gina and Zach are both still a little sick so Gina
and Zach decide to stay in Redwood City. Great game but by the
third quarter I'm ready to be back with my family. Stanford is
famous for it's intellect not for it's football. Oregon State
28 Stanford 21.
Sunday 10/11/98
We attend church with George and Margaret. We were surprised
when the monsignor introduced us during mass. Gina is emotional
during mass, a little out of character for her but I think the
children’s choir made her think about the future. After
mass we met and visited with several people including the Putnam’s
who have housed Brian Prawdzik (Stanford heart and kidney recipient
from our church in Spokane) on several occasions. Zach’s
first visit to the Ocean is at beautiful Half Moon Bay. He like’s
the sand better than the view.
Monday 10/12/98 5:00 AM
Before leaving I explained to Zach that were going to give him
some medicine to make him go to sleep. Of course he doesn't understand
but I am able to get him so say "OH no"
We are a little braver on the way home. Zach’s chloral hydrate
wears off by the time we reach Seattle and he is awake during
the last leg of our flight to Spokane. it's GREAT TO BE HOME!
Wednesday 10/14/98
Zach is fussy this morning and has a slight temperature. I work
at 9 AM so Gina calls Dr. Maixner’s office and takes Zach
in. Ever since Zach’s pneumonia hospitalization they always
work us in fast.
2:00 PM
Dr. Kapstafer calls. Zach has an elevated white blood cell count
and a shift that indicates possible infection. Ears, lungs and
throat are all clear but the fussiness and lab work are enough
to worry him and Dr. Garabedian. We start Zach on amoxicillin
and I am to call tomorrow. At 10 am and at 6 PM we have main
store meetings today which gave me a chance to thank the main
store associates for the fund drive for Zachary and for their
support. We are certainly very appreciative of all the fund raising
on Zach’s and it has been very helpful but it often feels
strange. We certainly never expected to be in this position.
What we need the most money can't buy, a suitable donor.
9:30
Talked to Jan Prawdzik for ½ hour. As I'm sure I've mentioned
before, her son Brian had a heart transplant and later a liver
transplant at Stanford. Brian was older and didn't need a lung
transplant but there are enough similarities that it's very interesting
to compare notes. We discuss the Stanford experience, faith and
organ donors.
Saturday 10/17/98
Zach hasn't been sleeping well and subsequently either have Gina
and I. His diarrhea is still bad. He had it even before we left
for California. Zach got a present from Bryce and Jeana yesterday
(Bryce is the Pharmacy Team Leader from Walla Walla. his son
Michael has Dr. Garabedian also) and a nice note from Phil in
Union Gap whose dad just passed away. "Mike and Gina..I
think of you both more and more..having spent time in the hospital
with my father..you are both so strong with all this and I know
how difficult it is. If there is anything you need let me know....PHIL
Thanks for the card and kind words ...God BLESS"
Tuesday 10/20/98
Gina talked with her friend Heidi yesterday. Heidi's son Brantz
was roommates with Zach during much of Zach's pneumonia hospitalization
in May. Brantz was the smallest of twins and was having problems
with reflux (couldn't keep his food down). Other than the fact
that they had two kids as home to contend with, we were often
envious of Brantz and his parents. At that time his prognosis
seemed much better than Zachary's. At one point Brantz was sent
home during Zach's stay but was back within a few days. From
what Heidi told Gina yesterday, that might have been the last
time Brantz would ever be home. The details I've gotten from
Gina are second hand and a little sketchy but apparently Brantz
developed some type of infection in his heart and has under developed
lungs. He is about eight pounds and is seven months old. Last
week his heart stopped for 22 minutes. Heidi's call yesterday
was to tell Gina that Brantz has brain damage that they think
is from the episode and that they want to make him a "no
code" (Let him die if his heart stops again.) We've met
several people with some pretty sad stories: The family who lost
track of their daughter who they finally found in the water nearly
drowned. She eventually died at the hospital. The large Hispanic
family who's son died of heart problems. Cassandra whose mother
took her off the transplant list because of the suffering that
her sister had gone though with rejection after a transplant.
Cancer kids. Two pound preemies that may never be normal. People
pray for us and worry about us and often wonder how we cope so
well. I was watching Zach and his Aunt Melissa dance to Glen
Miller (as they frequently do) and Zach was throwing his arms
and head back and laughing. Every time we play or he points at
something he knows and tells me what it is I realize how lucky
we are compared to so many other people, especially those who
have kids with some cognitive impairment. With one big exception
Zach is a normal little boy.
Saturday 10/24/98
As of yesterday we are officially on the transplant list. I called
Lisa at Stanford and she said we were only waiting for the insurance
company so I kept calling the insurance company. I left several
angry voice mails and kept calling until I found a live person
who walked clear across the building for me and finally found
me a transplant person. I was insistent and we managed to get
all the authorization to Lisa about a half hour before she was
to leave for the weekend. Three days earlier probably doesn't
mean anything but at least I was able to do something. I'm pretty
fed up with feeling helpless. Last night was terrible and Zach
breathing was very labored. All morning I worried about him at
work but finally this afternoon he felt better. This is the first
time in two weeks he's felt good and been playful. We explored
another route to felts field, it's still about 20 minutes from
home. Then we went to Shopko and picked up a few things so that
we could have our bags all packed and ready.
Tuesday 10/27/98 8:00 AM
Today's schedule consisted of a trip in to see Dr. Maixner at
9:00 AM (He always has us come in early to avoid contact with
sick kids) and then we have an appointment to meet with a reporter
from news four. Hopefully it will give us #1 a chance to say
thanks to all the people who have raised money for his trust
fund, to the people of Shopko and the Shopko's general office
for contributing money, to the Lions club for their support and
of course all the people who have been praying for Zachary and
#2 hopefully we can use Zachary as an example of the many people
who are awaiting organ donors and discuss the importance of organ
sharing.
9:30 AM
The appointment with Dr. Maixner didn't last very long. He noted
the rales (raspy sounds) in Zach's lungs and the fact that he
could feel that Zach's liver was quite enlarged. He immediately
called Dr. Garabedian who made time to see us. The visit with
Dr. Garabedian was another difficult one. Dr. Garabedian examined
Zach for 5 minutes and didn't waste any time telling us exactly
what it was. Being somewhat familiar with the condition I know
that it usually sounds worse than what it is but the term congestive
heart failure still hit me hard. Gina and I both struggle to
contain our emotions. I curse the damned roller coaster ride
we're on. With congestive heart failure the heart gradually loses
force in it's contractions, eventually it doesn't pump hard enough
to circulate all the fluid out that gradually accumulates in
his lungs. Also it can't pump the blood all the way through the
liver (The liver acts as a sort of filter for the blood) thus
the enlarging the liver until it can be felt just below the rib
cage. Dr. Garabedian had Mark do another echo to confirm things
and then Dr. Garabedian had us admitted to Sacred Heart. Because
of Zach's episodes that he has had in the past they make exceptions
to several rules for us. We don't leave during shift change and
Gina sleeps in the room all night.
Wednesday 10/28/98 10:00 AM
I called Lisa at Stanford today just to be sure she had the number
at Peds ICU at Sacred Heart and to find out where we stand on
the transplant list. Apparently UCSF or any of the other centers
around them are not doing any kids right now. There is one infant
at Stanford that needs a heart but is small enough that they
are looking for different sized donors. Sacramento is a separate
donor pool so they don't get kids from there but for the rest
of northern California Zach is the one and only child in his
size needing a heart lung block and at the present time he had
no priority one heart kids ahead of him.
5:30 PM
After work today I went down to the hospital and Zach is doing
wonderfully. My sister Julie and her husband Tom are visiting
and Melissa stops by after work. They have increased Zach's diuretics,
discontinued his potassium and added dobutamine and digoxin.
The diuretics have caused Zach to loose the fluid from his lungs
allowing Zach to breath much easier. The dobutamine drip and
the oral digoxin are both positive ionotropic agents (help the
heart beat stronger). When I arrived Gina was feeding Zach spaghetti.
Zach had also had a pancake for breakfast and a sandwich for
lunch. Zach and I play non-stop for two hours while Gina goes
home to shower and do a few errands like get our Halloween candy
ready. I can't believe how much energy Zach has. About 8:30 PM
Dr. Garabedian shows up. I admonish him in jest for being at
the hospital so late. I marvel at his caring and dedication but
I do worry that he doesn't get enough time for himself and his
family. The plan is to wait another day or two and if everything
is still good Zach can go home. I tell Dr. Garabedian about my
discussion with Lisa. Then we discuss Zach's progress and the
obvious need to just buy him time. We laugh at Zach and his affinity
for his tooth brush. As often Dr. Garabedian mentions his granddaughter.
She likes to brush her teeth with her grandpa. I almost mention
to Dr. Garabedian how the roller coaster ride is on an up swing
but then decide saying it could jinx things so I hold my tongue.
Friday 10/30/98
After four days it's great to have Zach home. I can't believe
how well he's doing. He has so much more energy. It's so much
fun to watch him. He points out all his things by name. Bed,
pillow, tubbies, bat, ball, blanky, Po, clock, Elmo and Barney
just to name a few. After work we take Zach to Toys R Us to see
what's left in the Halloween costumes. Since they’re out
of Po and Elmo in Zach's size we pick him out a cowboy
outfit with black and white furry chaps. Zach points and
says, "pants."
Saturday 10/31/98
Since in addition to Zach coming home yesterday we also sold
the van I spent most of today working on my truck. I've done
every possible maintenance thing I can do plus put on the snow
tires. I'll be driving an old clunker until we get Gina a car
so we need for my truck to be absolutely reliable for her and
Zach. We took a bit of a loss on the van but it's nice to be
out from under the payments. The plan is that if a donor is found
for Zachary then we will buy Gina a car down in California since
she and Zach won't be back for several months.
Sunday 11/1/98 Day 10 on the transplant list.
While walking Zach out side the sanctuary during mass I ran into
Brian Prawdzik. I can tell he really feels Zach's situation.
Like many others he has been praying for Zach. Brian looks like
a kid but talks like an adult. I guess having a heart transplant
and confronting death at such a young age would make any child
mature for their age but I marvel at how well he handles the
psychological side of being a transplant recipient.
Monday 11/2/98 Day 11
I spoke with Charlie Mitson today. His granddaughter Sarah was
recently taken off the transplant list for bone marrow and a
kidney. Amazingly they had found a donor for both but before
the transplant could occur she caught viral meningitis and her
cancer came out of remission, both of which make her a poor transplant
candidate so the doctors took her off the list. They plan to
try some experimental natural treatments in Colorado. I also
talked with Charlie's wife Mabel a few days ago. In both conversations
(lengthy by pharmacy standards) we discussed Zach's and Sarah's
situations at length and hardly touched on the fact that Mabel
and Charlie had just won seven million in the lottery. I know
either of us would give all we possess to have our loved ones
healthy. When Charlie shook my hand when he left I told him I
hope some of his good luck rubs off on me.
Tom called from Stanford today and we tested the beeper. It's
nice to be given a back up so that we can at least venture from
the phone for brief periods without the fear of missing the call.
Tuesday 11/3/98 Day 12
Zach had somewhat of an episode last night for the first time
in a long time. Gina had been sleeping and when I went to put
my book down to go to sleep I dropped it and woke up Zach. Gina
was tired so I tried to rock him to comfort him and when I tried
to give him juice he got mad and arched his back and fainted
like he has in the past. We already had the oxygen on so I cranked
it up and held the tube to his mouth and in a few minutes he
was breathing normally and before long was back to sleep. I feel
certain that with out the oxygen handy we would have been in
the E.R. or worse.
When my alarm went off I was in the middle of a dream that
we had gotten the call, I had to stop and think to be sure I
had been dreaming.
Wednesday 11/4/98 Day 13
We took Zach out to Felts field today to see the medstar
airplanes. Zach loved it. Two members of one of the flight crews,
a nurse named Rachel Zamora, and a respiratory therapist named
Terry showed us the planes. They let us go inside and see where
Zach will ride if we get the call. They also let Zach sit in
the pilot seat of one of the helicopters. It was a good visit
for us and Zach to see what's in the hanger and to take some
of the mystery out of things. Rachel and Terry both made a point
of holding Zach and of talking to him. Zach must have said airplane
more than a dozen times.
Saturday 11/7/98 9:30 PM
Wow! The roller coaster ride continues. I just got off the phone
with a Dr. Cecere at Stanford. They have a possible match for
Zachary. He had several questions for me about Zach and why he
was in the hospital last week and if he had been running a fever.
Trying to stay calm I told him about the CHF and why we were
in the hospital and that Zachary had seen the Dr. today, no fever,
clear ears, etc. If this turns out to be a false alarm tomorrow
will be a very bad day. Zach has been having problems with rough
breathing and grunting especially at night so we went in to see
Dr. Maixner today. He increased Zach's dose of furosemide to
four times daily to try to counter his problems with CHF. I also
visited Deacon Schuster today who baptized Zach. We had a nice
visit but I fear he is not long for this world. He has made the
decision that enough is enough and he will not continue radiation
treatments. The cancer has spread to his liver from his lungs.
I'll pray for him. We are scheduled to be interviewed by two
different T.V. stations tomorrow. Hopefully we'll get to stand
them up. I'm too nervous to write anymore for now. |
