School Starts (-:
Wednesday Sept 13th
We had a very exciting morning at Mullan Road Elementary. Zach
is going to start preschool on Friday! We're very excited and
a little nervous. It's a little scary to send our immunosuppressed
son out into a germ infested world full of little kids but seeing
how much fun he had playing with the toys and seeing all the
kids playing on our way in reminded us of how much Zach has been
missing out on being so isolated. The people at Stanford are
always reminding us (and me especially) that we didn't go through
all this to keep Zach in a bubble and we know they're right.
Hopefully this will help Zach with his socialization and eventually
his speech.
Sharon in NY sent us the story of her four year old daughter
Melissa's transplant and a great picture of her. What a cutie!
She has my permission to be Zach's first crush in 5 years. Thanks
for sharing!
Thursday Sept. 14th
The good news: Zach went poo poo in the potty for the first time
ever!
The bad news: He plugged it up with toilet paper first so I've
got some work to do. Yuk!
The great news: Organ donation was up 4 percent in the first
half of 2000 after being flat in 1999!!
Here's a quote from secretary of health and human services
Donna Shalala who we met at the White House,"Our efforts
to raise awareness about the importance of organ donation appear
to be paying off, but with 71,000 people on the transplant waiting
list, we still have a long way to go."
Tuesday Sept. 24th
We took Zach in to Dr. Lefond today. She is the neurologist that
sees him for his seizures that he had last year. If Zach stays
seizure free for the next six month and has a good e.e.g test
at that time then we can try to taper off the Lamictal he takes
for his seizures. It's his worst tasting medication so Zach would
like that a lot. We finally got to see Zach's MRI and unlike
Zach's echocardiograms it's very easy to see and understand the
point of interest. Zach has a very small injured spot right under
the surface by the back of his head. Hopefully it will turn out
to be little or nothing in time but I was surprised at how easy
it was to see. I've requested copies for Stanford so hopefully
we can get their opinion too.
Wed. Sept. 15th
Zach is so cute when he gets off of the school bus! He's the
last one dropped off and it's so cute to see a whole big yellow
school bus for such a little guy! We still take him to school
since he gets upset when he gets dropped off but we do have the
bus bring him home. All reports are he's doing great in school
except for drop off time. The teachers are good at not spoiling
Zach and we're working on it but it's tough.
Thursday Oct. 5th
I got a call from Gina on my way back into town. Zach's in the
hospital again. He has had a cold so we've kept him home from
school the last couple of days but I certainly didn't expect
anything like this. Zach apparently wasn't drinking fluids and
got dehydrated and then lethargic. Dr. Maixner being conservative
had him admitted overnight. The I.V. fluids seemed to perk him
up. So far all the blood work has been routine and Zach's White
Blood Cell count is normal so hopefully there's no infection.
We took Zach to get a chest X-ray in the wagon they keep in the
pediatrics unit. After that he wanted to be pulled in the wagon
so much that we must have made 20 lap around the entire pediatrics
ward. It was fun to see a few nurses that we hadn't seen in 11
months but not REAL fun. Hopefully we'll be back home soon!
Friday Oct. 6th.
I wanted to share a recent E-Mail exchange with one of Zach's
teachers:
Sandie: Dear Gina and Mike---you hang in there---Zach
is so lucky to have such
wonderful, loving parents....not to mention his other family
members and
millions of friends that have fallen in love with him! Our prayers
are
with him....and with you too....
Please keep in touch...
Love from all of us...
Lisa, Alice and Sandie....
Mike: Sandie thanks for your kind thoughts and words.
As usual when Zach is sick
they are very conservative. He''ll be in the hospital overnight
with some
I.V. fluids and if all is well hopefully you'll see his smiling
face by next
Tuesday. Keep you fingers crossed! Thanks, Mike
Sandie: Ok----we "expect" to see Zach at
school next week....all smiles and
ready to get those first words out....
and....our fingers are crossed he'll be feeling much better
today...
Oh by the way----as I took him out to the bus this week....(which
is his
favorite thing in the whole world to see after school...he squeals
with
delight and just loves his Bus driver!!!) A big fire truck was
parked in
the Bus spot since we were having fire safety week at our school
that
day....and of course Zach was so excited about this that we stopped
to
walk around and look the entire truck over....he was smiling
from ear to
ear when he saw himself in the shiny hubs.....
Give Zach our love and hugs too!!! :)
________________________________________________________________
Also congratulations to transplant patient Adam
Vassar on his trip to the Olympics with Make a Wish foundation!
Monday October 9th
Zach's been home since Friday and is doing well. Friday and Saturday
were a little rough since every time Zach's in the hospital when
Dr. Garabedian is gone they load him up on steroids assuming
the possibility of rejection. I guess it's best to be conservative
but the high dose of steroids effect Zach's mood and turn him
into a little monster. Things are going well now though. Zach's
cold is a little better and he is on the antibiotic Cefzil for
the next week just to be on the safe side. If all his still well
tomorrow he'll be back to school. Today we go in for a blood
draw to check Zach's Prograf level in preparation for our next
check up with Dr. Garabedian on Wed. Got to run, if we're late
for our blood draw it's not accurate.
Friday October 27
Zach's running a high fever again so as usual he's in the hospital.
Room 321 at Sacred Heart. It's too soon to know much but hopefully
it will just be another short stay (knock on wood). I'll do an
update as soon as we know more.
The last three weeks Zach has been doing well. We had a great
visit to Dr. Garabedian as well as two blood draws in our never
ending battle to keep Zach's Prograf level correct. School has
continued to do well and I bought a book on sign language to
help in our quest for a communications breakthrough.
Saturday October 28
Zach's fever got up as high as 101.7 degrees under the arm last
night which is like 102.7 by mouth. It's a new record high temperature
for him since the transplant. Thankfully his fever broke this
morning and by the time I left the hospital tonight at about
10 p.m. Zach was playing catch with me, playing and laughing.
Hopefully he'll get discharged tomorrow. Although as usual they
put Zach on I.V. antibiotics we think it was just a virus since
all the lab work came up negative. Gina's been great as usual
staying with Zach all the time except for the break I give her
after work and the break her sister Melissa gives her in the
morning. Hopefully on Monday, my next day off, I can give her
a longer break. It's pretty early in the winter sick season and
we're already tired of going to the hospital even though they've
got the nicest nurses anywhere. Hopefully more good news tomorrow.
Monday October 30
Zach's doing great and is back to his old self again. We got
home Sunday from the hospital and Zach and I are having guys
night and watching some Monday night football while Zach's mom
works.
Tuesday October 31
Happy Halloween! Zach was a blue M&M today. We were invited
to his school to do some trick or treating and have a short party.
Zach went to a few housed in our neighborhood. It's so cute when
he holds his candy bag out. At one house Zach even said thank
you (in sign language) without being prompted.
Monday November 13th
Zach's two year anniversary last Thursday was pretty low key
for us. The three of us just spent the day together and enjoyed
our good fortune. I'm sure that day is much harder for the donor
family but this anniversary was easier for us and hopefully time
has made it easier for them as well.
We finally were able to get Zach's Synagis (Monthly RSV vaccination)
approved and he'll get his first shot of the season tomorrow,
ouch!
Zach is due for a second flu shot but no one has the vaccine.
It's hit and miss as to who gets it in so we're keeping an eye
out for it. The county health dept. and Zach's Dr. both can't
get it right now.
We spent a fun day in Odessa with the King family yesterday.
Gina had to work but Zach really enjoyed playing with the boys.
Cousins Lane, Seth, Chad, Ryan, Jared, Trevor & Andrew can
really fill up a house!
We enjoyed meeting Alco Canfield from the department of disabilities
this afternoon. She is Zach's case worker in charge of evaluating
whether Zach will qualify for some secondary medical coverage
through the state as a backup to our insurance. Zach will have
life long medical expenses and it's important that we lay the
foundation for him to always be able to get his medications.
Hi to 6 year old Austin Krambeer and him mom Melanie from
Iowa. Austin got a new heart 5 & 1/2 years ago and is doing
well. Keep it up Austin!
Friday 11/24/00
Last Sunday I insulated our attic (something I've been putting
off for years) and the next day at work I noticed I was a little
stiff & sore so I though maybe I had just overdone it a little.
In fact by that evening I was incredibly stiff and sore and worse
I was getting chills like I've never experienced. Also I had
a large bump on my neck and I wondered if I had been bit by a
spider or something. When I awoke Tuesday morning the chills
were gone but the sore muscles remained and I had some red spots
on my abdomen. I promised Gina that if they were worse on Wednesday
that I would go see the Dr. and sure enough they were. Even though
there were more spots on Wednesday I felt a little silly going
in since for the first time in three days I felt great. The Dr.s
were at first hesitant with the most obvious diagnosis because
they said I felt way too good but two MD's and a ARNP all finally
agreed that I have the CHICKEN POX! How could I have the chicken
pox?!? I remember having them VERY briefly at age 8 but apparently
it was so brief that it didn't trigger my immune system.
The first thing I thought of was Zach. We had planned ahead and
given him the chicken pox vaccine before he had the transplant
but it's only 80% effective and we had lots of direct contact.
After several calls Dr. Maixner & Garabedian decided we should
do a blood draw on Zach to see if he had the antibodies against
the chicken pox virus in his system (this way we'll know if we
have to worry next time or not) and then because we won't know
for two weeks if he does have the antibodies they gave him 4
shots of VZIG which is an antibody against the virus. I'm told
the shot is very painful and that they usually have 4 nurses
all give their shots at once, deep in the muscle of his rear
end. ouch!
I'm told Zach's doing fine, I'm excited to my parents house through
the Thanksgiving weekend so that we don't needlessly expose Zach
even though he should be fine between the earlier vaccination
and the VZIG. In any case I'm very glad to be careful not that
I know how awful the chicken pox can be. They say it's worse
for adults and I believe them. To quote another adult Chicken
Pox sufferer whose website I read, last night was "The
Night of a Thousand Knives". I finally managed to get
two hours of sleep in the sitting position and I look like an
acne crash test dummy or something. I swear my body is one giant
lesion, ouch!!! Hopefully I'll be scabbed over in time to travel
south to Stanford for Zach's yearly check up next week.
Wednesday 11/29/00
We just got back from Stanford tonight. All went well and Zach
is doing well. He slept on the last part of the flight home.
Gina and I talked on the way to Zach's visit that we hoped our
luck would hold out and God wouldn't let us get any bad news
and sure enough our prayers were answered but not in the way
we expected. Because of Zach's recent exposure to the chicken
pox from me they decided not to risk any invasive testing so
no heart catheterization or angiogram. Zach's X-rays looked fine
but are really only a small part of the big picture. Although
Zach had the chicken pox vaccine before the transplant, because
it's not 100% they can't risk Zach possibly getting the chicken
pox and putting the other transplant kids in the clinic at risk.
So all in all it was a short easy visit but unfortunately one
that we'll probably have to repeat in a few months. Thanks to
Dana Schafer and the Sunnyvale Sheraton for the great accommodations.
Thursday December 7, 2000
Well even after the vaccination and VZIG Zach has come down with
the Chicken Pox. We are giving him Zovirax suspension four times
a day and Benadryl for the itching. I feel so bad for him, I
know EXACTLY what he's going through. We worry about how well
his body will overcome the virus with his immune suppression
but we're hopeful that the VZIG and Zovirax will help limit it.
First on our agenda is contacting his preschool so the parents
of other medical fragile kids can be notified. We feel badly
about exposing them.
Good bye to Helen Luikart who has left as transplant nurse
at Stanford. We've gone through a lot with Helen and we'll miss
her a lot. We wish Helen well and I'll try to get it touch to
say goodbye and good luck. I guess Joan and Pat will have to
suffer through my million questions now!
Dr. Garabedian called and we reduced Zach's Prograf dosage
today. It's a little high (11.5 when we're shooting for 9) but
also we worry about his BUN (Blood Urea Nitrogen?) being too
high since it can be an indicator of kidney problems.Prograf
is so hard on his kidneys but hopefully this lower dose will
help. I plan to take a continuing education class on Lab values
in Feb. Not only will it apply to my yearly credits I need to
keep up my pharmacy license, it will also help me greatly since
I'm always trying to decipher Zach.s Lab values.
We've also been making a little progress with Zach and his
sign language. Eat, drink, happy and more are all things we've
got him to repeatedly use. Hopefully they'll continue to stick.
We're working on "go" right now. I'm sure part of the
problem is he understands words when we say them and Gina and
I are too good at anticipating his wants instead of making him
have to work harder to communicate. It's something for us to
work on.
Sun. December 24th
The house is stuffed with presents for Zach. Zach's Uncle Tom
& Aunt Julie and Grandma & Grandpa Ozuna have arrived.
I stopped at Zach's Aunt Melissa's house to give Zach his medications
and to say good night. He's staying over there tonight. We has
so much fun wrestling and playing. Zach makes such good eye contact
and has so much fun and is so much fun for me. I must be the
luckiest Dad alive. I look forward to him and I getting closer
once our next child comes. Gina is due in late June and we're
excited to give this parenting thing a try. I think (knock on
wood) that it will go a little easier this time.
Friday December 29th
It's great to be home. I've been working at other stores a lot
to help out with the severe pharmacist shortage in central Washington
state. I really miss Zach and Gina when I'm gone. Zach's doing
great and enjoying his new Christmas toys. We've been continuing
his sign language and are trying to get him to say "bath"
now. I usually don't share the notes we get much any more but
this one that Gina just got brought a tear to my eye so I thought
I'd share it.
Dear Gina,
My name is Tanya Bachik and my husband, Tom, received his heart
and double
lung transplant on October 24, 1998, approximately two weeks
prior to
Zach's.
I remember Tom was still in remediate ICU when Doctor Doyle came
in to see
how he was doing. It was on a Sunday, and she told us that they
had just
preformed the same cardio pulmonary block transplant on a two-year-old
little boy just the day before. I remember thinking what that
little boy,
his family, and the donor family must be going through.
Tom and I went to the H.O.M.E. apartments the next Wednesday.
One afternoon
(not long after we moved in), around 5:00 p.m., I went to get
some ice from
the fireside room and whom did I get to meet, yes, Zach and you.
Zach was in
the mist of tearing books from the bookcase and you were looking
at him with
such pride, as he was doing such a good job of it. He pulled
the books down
and you would put them back. He definitely didn't look like a
kid who had
just received a heart and double lung transplant (really, my
husband still
looked pitiful). I know you were dealing with a lot and yet you
were always
cheerful. No one would have known that such an event had just
taken place in
your life, or, what you, Zach, and Mike have been going through
for two
years.
I am so glad that you are having another child. I'm sure Zach
will be happy
being a big brother.
I, like you, thank God for organ donators and for God's helping
hand. My
husband would not be here today if one mother had not made the
decision to
donate her son's heart and lungs.
I know I will continuously read about Zach's progress. He's a
survivor; I
expect to read about him for years to come. May God continuously
bless Zach
with the best of health and you with endurance.
May God's blessing be upon you in such a powerful way that you
may know His
presence and feel His care.
In Christ's Love
Tanya :-) |