January 7, 2014
We had to be at primary children’s
hospital for some preoperative tests today. Eliza was scheduled for 10:00am to
have an echocardiogram done. We checked in and had to wait about 30 minutes for
them to call us back. About two hours later we were done with the echo. We were
then off to check in at same day surgery. There Eliza had a little physical and
they gave us instructions for the next day for surgery. Her surgery was
scheduled for 8:30am. We needed to be back at the hospital at 7:00am on
Wednesday January 8th. Also, while at the hospital we had to have her labs done
and a chest x-ray. It was about 2:30pm when we left the hospital. We went and
grabbed some lunch and checked into our hotel. At 4:30 we went back to the
hospital for a pre-surgery class. At this class we watched a video and then
were talked to a little bit more about the procedure and what would happen the
next day. While they were talking to the adults Eliza got to play doctor with a
nurse. We were then taken on a little tour. We were shown the operating room
doors where we would have to say “see you later.” We were also shown the
cardiac ICU as well as a room on the next floor where they would move her when
she was released from the CICU. After
this tour we went back to the hotel room where we spent time as a family and ordered
pizza and had ice cream. We then gave Eliza a bath and put her to bed with us
following close behind.
January 8,
2014-Surgery Day
Partial AV Canal
Procedures Performed:
1) Closure of primum
ASD using pericardium
2) Closure of cleft
mitral valve
3) Tricuspid
annuloplasty
Today is
the day of Eliza’s surgery. We are feeling so many emotions today-mostly scared
and nervous. So many people are thinking and praying for Eliza and our family
today which we are so very grateful for.
We got up at about 5:30am so we could be at the hospital to check in at
7:00am. When we got to the hospital we checked in at same day surgery where the
nurse checked her glucose again (since it was high the day before), changed her
into her hospital pajamas and then we were sent to the operating waiting room.
In this waiting room we met our
anesthesiologist. He said when we departed he would go with Eliza into the
operating room; give her a mask to breathe the anesthesia (which she got to
choose her favorite flavor to breathe in-she chose cherry). After she was under
they would place all her wires and tubes so she wouldn’t have to feel it. He of
course had to explain all of the risks associated with general anesthesia and
we signed the consent form.
Next our surgeon, Dr. Aaron
Eckhauser came in to meet and talk with us. He said he had just looked at her
echocardiogram from the day before. He explained to us how the surgery would
go. He told us he would first cut into her breast bone to get to the heart then
he would have to cut into the heart. He would put a stitch in the small ASD,
then use her pericardium (which is an outer layer of the heart) to make a patch
to patch up the larger ASD in her heart. He then would stitch up the cleft in
her mitral valve. Then he would look at her tricuspid valve because one of the
leaflets appeared to be folded over or not there. He said he couldn’t
completely fix it but hopefully he could stitch it up so it would be smaller
and work better. He gave us the risks of the surgery and had us sign a consent
form. He said we would be called about every hour with an update on how the
surgery is progressing.
While we were talking to the
surgeon, a child life specialist was playing with Eliza to make her a little
more comfortable. Eliza then got to get in a wagon, was given an iPad to play
with and Mike and I, the anesthesiologist, and child life specialist started
our walk down the hall with Eliza in her wagon. This was at about 9:00am. We
stopped at the operating room doors and gave Eliza hugs and kisses and told her
we loved her and said see you in a little while. They then wheeled her away
through the doors as Mike and I had to turn the other way and walk back towards
the surgery waiting room. That moment was by far one of the worst I had
experienced. I stopped at the restroom on the way to the waiting room and lost
it for a minute. When I walked into the waiting room I found Mike who I could
tell was having a rough time too. We then tried to make ourselves comfortable
to wait for the next few hours. We got a call a little bit later saying they
had put her under the anesthesia and made the incision and they would call us
with another update when they put her on bypass. Grandpa and Grandma Eppich
came and met us there. About an hour after the first call we got another call
saying that everything was going well and she was now on bypass. The next time
they called they said that things were going great and they took her off
bypass. It wasn’t too much later that
Dr. Eckhauser came and found us. He told us that it went well. He said they
stitched up her small ASD and the cleft in her mitral valve. They patched up
her large ASD. Also, he said that he stitched up her tricuspid valve and both
valves have a mild leak which shouldn’t cause her any problems. He said they
would call us shortly once they moved her into the CICU and we would be able to
go and see her. The surgery took about 4 hours to complete.
We were able to go to the CICU and
see her not too much later after we talked to Dr. Eckhauser. I can’t even
describe how I felt walking into that room seeing her hooked up to all the tube
and wires and still pretty sedated. She would open her eyes a little bit here
and there but still really out of it. The nurses explained to us everything
that she was hooked up to and how she was doing great not having to be on much
medicine.
We did have a really scary
experience not long after she entered the CICU. Her mouth was really dry and
she wanted a drink but couldn’t have anything yet because she was still quite
nauseated and would throw it up. She got really frustrated and held her breath.
She immediately turned blue and they had to bag her and get more oxygen into
her. She was in so much pain and got
really frustrated that she couldn’t bring herself out of it and couldn’t get
her breath. Mike and I and Grandma Eppich were all in the room when this
happened. It was really scary having to watch them ventilate your daughter
because she couldn’t breathe. I stood at the end of her bed shaking. This was
one of the worst things I have experienced. Mike and Grandma Eppich both had to
step out cause they couldn’t handle it. This happened a couple more times. One
time when I stepped out she got upset and I believe another time but she was
able to recover herself both times without too much trouble or being ventilated.
Other than this incident things went
really well with her recovery. She was out of it most of the day.
I couldn’t leave her very easy and
stayed by her side the majority of her stay at the hospital. I think I left the
hospital once. She struggled when we weren’t there and got nervous. That night
we were given a room at the Ronald McDonald House on the 3rd floor.
I didn’t want to leave her side and the only way I was able to was knowing Mike
was staying with her. When he came up to get some sleep I went back down to her
room and stayed by her side cause I couldn’t sleep anyways. They had to pace
her heart a little bit throughout this night but didn’t seem to have any other
problems.
January 9, 2014
Eliza remained in the CICU today
for observation. They removed many of her tubes and lines. They took out her
catheter and chest tube and central line. They left in the pacer wires though
and an IV line. She was still quite out of it today so she slept a lot of the
day. Her rhythm was still in between sinus and junctional rhythm but they did
not have to pace her throughout the day. Mike and I had to pass a CPR “class.”
We watched a video, had to answer some questions, and practiced CPR on a dummy.
January 10, 2014
Eliza’s
heart rhythm was still going between sinus and junctional rhythm but she did
not have to be paced. They said that she could be moved to the third floor
today, out of the CICU. She had another echocardiogram done today and a holter
monitor was placed so they could see how long she stayed in a junctional
rhythm. She was finally able to get up
and we walked around the CICU. She even got some visitors. Marci and Karli
brought Tyson up to see Eliza. That
really brightened her day. She loved being able to see Ty. Also, Grandma Olson
and Lauree came and visited her.
January 11, 2014
This was a
good day for Eliza. Lauree brought Tyson back to see Eliza which was so good
for her. She got to get out of bed and go to the playroom with Tyson. They also
let her come and eat at the cafeteria with Mike and I. She had many more
visitors too. Grandpa and Grandma Eppich came to visit again. Also, Kerry and
Sheri and their boys came to see her at the hospital.
There was a
lot of downtime at the hospital so we filled it by playing with princess toys,
playdough, and watching movies.
She was able to not have the nasal
oxygen and had her foot IV lines removed. Her heart rhythm was mostly normal
but still going back and forth a little bit. They also removed her holter
monitor.
January 12, 2014
We were
told that we could take Eliza home today. We were given instructions on how to
care for her regarding her bathing and activity. We were told that she just
needed to take shallow baths not completely submerging her scar. She could do
most everything but things like jumping on a trampoline and things like that. We
both said good thing it is winter. We couldn’t pick her up directly under her
arms for 6 weeks as her breast bone was healing. It is crazy to know that it is
wired together and the bone will just grow around the wires. She only came home
on Tylenol and a medicine Lasix (for fluid retention). We were told we needed
to come back up on January 22nd for a follow up. They removed her
pacer wires. We gathered up all our stuff and got her medicine and left. We
went and picked up Ty at Lauree’s house and came home.
Eliza received such great care at Primary Children’s
Hospital. She was bribed and given Teddy bears, princess toys, and like four
blankets. She really struggled taking her liquid medicine while at the
hospital. She fought us and bribery didn’t even work to take it. She was mostly
on just Tylenol which many times was given to her as a suppository since she
wouldn’t take it as a liquid. It wasn’t until we got home and said that we have
the medicine from home that we even got her to take the Tylenol. We had to
crush up her Lasix and mix it into things to get her to take it. She didn’t
even seem like she needed pain medicine when she got home unless she got bumped
or something. She did have a couple nights were she woke up moaning and we gave
her some medicine and we kept it in her as much as possible for a while. But
she really didn’t need to seem to need it. It is amazing just how fast she
recovered from her surgery.
January 22, 2014
We went back to Primary Children’s
hospital for a follow-up for Eliza. She has been doing really well. She had a
chest x-ray and EKG done. Both of these tests looked great. Her incision has
been healing really well too. She is doing amazing they said which we
completely agreed to.
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