Emails From Zach's Fontan Hospitalization
Monday, August 30th:
Dear Friends and Family,
We arrived in Michigan with no problems, and Zachary did fine on the
plane. He got a little fussy towards the end, but so did I! Today
Zachary had his heart echo, EKG and chest x-ray and all went as well
as expected with no surprises. Tomorrow is the heart cath, and he'll
be admitted to the hospital afterwards to wait for his surgery the
next day. It was nice seeing the familiar faces of the doctors and
staff who have taken such good care of us in the past here at the
University of Michigan.
I do have computer access here in the playroom, so I'll keep everyone
updated as much as possible. My email here is
susan_r_tucker@hotmail.com. Also, we are staying at the Med Inn, a
hotel attached to the hospital to make things easier.
Thanks for all the well wishes and prayers, we certainly have
wonderful friends and family!
Wednesday, September 1st:
Dear Friends and Family,
Well, we are here in the playroom on the Cardiac Floor at the U of
Michigan waiting for them to take us for the Fontan. Zach is having
a ball. He doesn't know what is about to happen! Zachary is the
second case of the day, we have been told to expect the surgery to
start around 11:00 AM and last about 3 hours. The heart cath
yesterday went well, they had to coil his right intramammillary
artery (sp?) but they said that was fine. Dr. Bove reviewed all his
tests and said everything looks great and is expecting a great
procedure! What a relief!
We'll update you all later when we get settled in the PICU....
Wednesday, September 1st:
Dear Family and Friends,
Well, we made it! Zach did great! We were scheduled for 11:00 AM,
but we didn't get called to take Zach down to anethesia until 12:15.
They gave him some Versed in his artery line and he was really happy,
giggling and getting groggy. By the time they put him in a little
red wagon to take him back to surgery, he couldn't care less where
Mommy and Daddy were! We waited and waited, and around 2:30 PM the
nurse came out and said they were getting ready to put him on bypass.
It took a while to cut through all his scar tissue and prepare him
for the procedure, but they were expecting that. Another hour or
less they came back out and said the procedure went well, and they
were getting ready to close. Another hour and they were sending him
up to the PICU. Right now, we have about a half hour until we get
to go see him. Dr. Bove said everything looked great, no problems
and he hopes that the fenestration will close on its own in about a
year or so, not requiring another surgical procedure. He's now
making the holes about half as small as he used to with good results.
Again, we thank you all for your prayers and good thoughts!
I plan to respond to everyone who sent me mail privately, but it's
hard here with so little computer time. I will as soon as I can!
Thursday, September 2nd:
Hello!
Zachary looks great today! He was extubated (breathing tube removed)
in the PICU (Pod A) 4 hours after surgery. He was moved to the
general floor this morning, less than 24 hours after his Fontan
surgery. He's not happy at all, he keeps trying to sit up when he
wakes and realizes it hurts. He has 4 big chest tubes taped to his
chest and attached to two large drainage boxes. Boy, he really
does not like those. We have to keep them until he stops draining
blood and fluid from his incision. The docs and nurses estimate
10 - 14 days, but we are shooting for the hospital record of 5 days! He woke up briefly this morning and drank two bottles of Pedialite, but shortly later threw it up. Too much too soon, but he's so thirsty. Poor little guy. He's sleeping now, with Daddy watching nearby. One of us will be with him at all times because we're afraid if we leave him alone for a minute, he's going to pull all his tubes and wires and be running down the hallway in his hospital gown! Such a little trooper.
Savannah is doing great, for those of you who have asked, we decided
it would be best for her to remain in Texas with my sister Terri.
(Who flew in from Rhode Island on her vacation time to help us
out - we owe her big time!) We call her all the time for Savannah
updates, and have offered her a bonus if she can get her to sleep
through the night!
Friday, September 3rd:
Dear Friends & Family,
Yesterday afternoon and today so far have been about the same.
Zachary wakes up for short amounts of time and tries to sit up and or
roll over, pulling at his chest tubes. He hasn't gotten them out yet,
but he's constantly pulling on them and his I.V. lines. He's so
unhappy, and seems depressed. He also hasn't eaten anything since
Tuesday afternoon. We can't get a smile for anything. He also
seems to be ignoring us. I guess he's a bit mad and I have to say
I can't blame him. We did go to the playroom today (drainage tubes
and all) and he banged the cymbals with his little hammer. Then he
fell asleep in the stroller. He's on Kefzol (an antibiotic for his
chest tubes), Lasix (a diuretic), Aldactone (another diuretic),
Morphine Sulphate (pain killer), Zantac (for upset stomach) and may
start Capoten over the weekend.
I hope to report on a happier Zachary after we get him up and out
of the bed more this weekend. He is showing a slight interest in
some of the toys we brought for him. We'll get a smile out of him
in no time!
Have a great weekend everyone, and we'll be hanging in there....
Sunday, September 5th:
We got a smile! :)
Not a dazzling Zachary smile, but we'll take it! All day yesterday
and this morning were pretty discouraging, but this afternoon is
getting better. Zachary had consistently thrown up everything he
ate or drank. We called the doc and he put him on Reglan for
nausea, but it didn't work. After the second dose of Zofran
(another nausea med) he started to do better. This afternoon he has
eaten two fistfuls of Cheerios and a small glass of water. He did
have an appetite but couldn't keep anything down. After throwing up,
he'd grab his sippy cup and take another try! Poor baby. But now
he seems to be over that. Now that he can eat, he's been switched
from Tylenol to Motrin for pain. He's off the Morphine, and still is
getting his Kefzol (antibiotic), Lasix and Aldactone (diuretics) and
Zantac (for nausea).
His chest tubes are still draining pretty well.
The playroom (and the fast computer!) has been closed all weekend
for the holiday, so we haven't been able to play there. This
computer downstairs at the info desk is painfully slow....Some of
the nurses take pity on me and let me use the good computer at the
nurses station, that is until this one nurse (who shall remain
nameless) chases me off! :)
Once Zachary naps, we'll get him up and moving this evening.
He's been playing with the diaper wipes, stethoscope, little
flashlight, and tape rather than any toys right now. But at least
they are keeping him interested! He is watching movies nonstop in
the background - Teletubbies, Muppets, Dr. Seuss and Bear. His pain
still bothers him, especially when he's sleepy and forgets where he
is and tries to sleep on his tummy. Once he's a little more active,
we'll request an adult size hospital bed so we can lie down with him.
Well, that's about it so far. Thanks for all the emails, cards,
toys, food and phone calls we've received! It makes things easier
to know that so many people care!
Monday, September 6th:
Hello All!
We've now been in Michigan over a week. Seems like years!
We had a good day today. Zachary has been eating so much better,
and he's now drinking milk and keeping it down. We went outside to
the courtyard in the stroller, chest tube drain boxes and all. He got
a kick out of feeding the little chipmunks and birds peanuts and
Cheerios. Those cute little chipmunks are so tame, they fight
amongst themselves who gets to sit in your hand and eat the peanuts!
Zachary thought they were funny. We had to be careful leaving not
to run over them in the stroller! After we got inside, Zachary was
able to stand up in the open play area and slam the play kitchen
cabinet doors open and shut. That's the Zachary we remember! He was
pretty tired and acted like he was in pain when we returned to the
room, so he was given a little morphine in his PIC line. He took a 4
hour nap and gave Chris and I a little break! He was put on
Captopril last night, a heart medication.
I'm on the nurses station computer now, Nurse Ratchett is not
in sight.....
I hope everyone had a good weekend!
Tuesday, September 7th:
Every day is getting better and better!
Zachary's chest tube draining is decreasing, and there is talk of us
going home towards the end of the week! Yeah!
We've been playing in the green rice sandbox in the playroom today,
my green boy had a really good time. I took some photos, I'll put
them on his "fontan" section of his webpage when I return home.
He's walking around, stepping over those annoying tubes. He hates
his meds, but other than that he seems in good spirits. He's
laughing and giving me "big hugs" (Teletubbies reference :)!) He ate
a popsicle today, or should I say the popsicle ate him? He was
cherry all over, but it mixed nicely with the green from the rice.
My colorful boy!
They took him down to the cardiology lab to do a study this morning.
They were able to induce atrial flutter with his pacer wires.
It quickly went away when his heart rate decreased. He had no
signs of atrial flutter before the surgery, but they said that it is
common in the years afterwards. They are doing a study (one of many
here) to see if an extra tiny incision (resulting in a small scar)
in the heart in fontan patients will interrupt the electrical
pattern that causes atrial flutter. Very interesting. There is very
little risk to the patient (if any), and Dr. Bove fully approves and
is part of the study. We won't know the official results for about
5 years, and Zachary will be followed yearly back in Texas. Then
we'll find out if Zachary was in the group who had the extra incision,
or in the control group who didn't. Studies like these help refine
the fontan procedure for kids later down the line.
Take care ya'll (I miss that Texas accent)!
Thursday, September 9th:
Dear Friends & Family,
We are home! Yesterday morning the docs looked at him, saw he had decreased
his draining, so they pulled his chest tubes (big ouch!). He had already
one pulled out a bit and it was whistling as he breathed. They sent him for
a heart echo, an EKG and chest X-rays and he passed all with flying colors.
So they said we could go. We let him sleep his sedation off, washed him up,
dressed him in real clothes and said goodbye! We were on a flight back to
Dallas/Ft. Worth first thing this morning. Zach was very tired and fussy on
the flight, and finally fell asleep 20 minutes before we landed. The first
things he did at home were to check out his toys, chase a cat or two, and
fall asleep again. We are SOOOOOOOOO happy to be home!
We can't express our thanks enough to all of you for your love and support.
You guys are all great!
