December 1- Back
on October 20th when the KTVX Channel 4 television news crew was
doing a short documentary on the Newborn Intensive Care Unit (NICU) at Primary
Children’s Medical Center, we were told that Sarah had been included in a few
of the shots, but no one would say whether or not she would actually be in the
documentary. They couldn’t even tell us
when or if it was going to be aired. The
answer came during the week. There were
a number of commercials during the week previewing the show that was to be
broadcast tonight. Sarah was in every
commercial. The program was titled, “Born
on the Edge”. Sarah’s story wasn’t told,
but she was being held and fed by one of her nurses who explained more about
all the sick babies that were in the NICU and the care being provided by the
nurses. There were some good shots of
Sarah. The program made you appreciate
how ill some of these babies are and how blessed we are to have a hospital so
close with the skills and knowledge to save many of them.
Sarah has been doing extremely well. She’s off her oxygen and eating well. She’s
been gaining some weight too. We wish
she didn’t have to go in for another surgery, but we’re preparing ourselves for
it. It’s not for another 2 weeks. She will need the approval of her
cardiologist before the surgery can actually take place. That visit is scheduled for the 11th. She really does need the surgery, so
hopefully her heart will allow it.
December 11- Had
an appointment with Sarah’s cardiologist today.
She had an X-ray and an ultrasound of her heart. There were no surprises and most importantly,
no heart congestion. He thought that she
was doing very well and gave his approval for her upcoming surgery.
December 16 –
Sarah’s surgery is scheduled for tomorrow, so they needed to have blood drawn
today. She cried at the poke, but that
was all. They took it from a vein in her
arm. Fortunately, it went well and we
weren’t at the hospital for very long.
After we got back home, Sarah’s grandfather (my father-in-law), a close
neighborhood friend, and I gave Sarah a priesthood blessing to help both her
and her doctors get through the surgery tomorrow without complications. Her mom and I also started our fast for her
tonight. In addition to all the prayers,
it’s one of the only physical ways we have to show our faith and serious
desires to have the Lord bless her. It
brings us comfort as well, knowing that we are trying to do our part, as little
as that may be. Our meager efforts only
show our faith. The Lord does all the
significant work. Sarah had to start her
fast from formula as well, although hers wasn’t voluntary. She couldn’t have anything but water after
2:00 a.m.
December 17- They
don’t like to have the babies go for too long without food, so they are
scheduled for surgery first thing in the morning. Sarah wasn’t the first on the schedule,
however, and we didn’t need to be at the hospital until 8:30 a.m. We were a bit frustrated to learn that Sarah
needed to have another blood draw. The
one done last night showed a low platelet count and they needed to know if that
was an anomaly or if that was something they really needed to deal with. A low platelet count would mean a lot of
extra bleeding.
The lab technician assigned to do the draw tried to find a
vein in her right arm, the opposite arm from the one used last night. He couldn’t find one that he was comfortable
with, so he tried the arm they did last night.
He inserted the needle and missing the vein, started moving the needle
around in her arm hoping to find it.
This went on for 30+ seconds with no success. Sarah was screaming in pain, and he started
crying too. He was clearly frustrated
and I’m sure, feeling a lot of stress. He
finally withdrew the needle, but after about a minute, he tried it again in the
same arm. Still no success. I know that he was doing his best, but at
this point, I was pretty frustrated and tempted to have him stop. He called another lab technician for
help. She was obviously more
experienced, or talented, and successfully made the draw the first time using
the right arm, the one he couldn’t find a good vein in. She made it look so easy.
We thought that we were finally done with all the poking
only to learn that we were just starting.
A different nurse or lab tech, not sure which, had to do a bleeding time
test. An automatic device stabbed two small
knives into her right forearm. A timer
was then started to see how long it would take to stop bleeding. It took 6 ½ minutes, which is normal. We were told that this was all precautionary
testing.
Unfortunately for Sarah and our elevated stress levels, we
weren’t finished yet. A third nurse or
lab tech came in and said they needed more blood. They couldn’t use what had just been
previously drawn. By this time, I’d had
enough and objected. Could they really
be that incompetent? They explained that
the anesthesiologist wanted an electrolyte study done which couldn’t be done on
the sample already taken because there wasn’t enough. Apparently, the study request was made after
the earlier blood draw. These people
really need to learn to communicate better and more effectively so they don’t
have to put these poor babies in so much distress, let alone their
parents. So once again, she had a needle
put into her right arm. Fortunately, it
went quick and simple.
Sarah was given a shot in her leg in preparation for
surgery. It was supposed to make her
sleepy. The anesthesiologist came for
her right before noon. He explained the
surgery to us, including his role and all the standard risks involved. He then took her off to surgery. At 2:45 p.m. we got a call in the waiting
room saying that they were just finishing up and that we should wait for the
surgeon to come and talk to us. She
never came. At 3:45 p.m. we decided to
go to the Pediatric Intensive Care Unit (PICU) where she was supposed to go
after her recovery, to see what they knew.
We found out that Sarah had been there for about an hour, but no one
bothered to tell us. What a day!
She was pretty much out of it still, but she cried out in
pain with every touch or movement she made.
She was awake enough to take 2 oz. of apple juice. They started her on a continuous Nubain
(semi-synthetic opioid analgesic) drip for the pain. The neurosurgeon finally came and informed us
that everything went really well. The fat
lipoma was much larger than expected, but she got most of it without any
problems. Some bone had to be removed
from some of her vertebrae in order to get to the lipoma. She used a laser to cut it away from the
spinal cord, which is more precise than a scalpel. She didn’t think there would be any problems
in the future, but only time would tell.
Because of the nursing shift change, we didn’t get to stay
very long. I did get to hold Sarah right
before we had to leave. It was a little
awkward, since the surgery was on her back and I really didn’t want to put any
pressure on it. How do you hold a baby
in your arms and not put pressure on the back?
Thank goodness she was on some serious pain medication. We hated to go home, but there was really
nothing else we could do for her tonight.
December 18-
Sarah did really well today. She was
taken off oxygen and had the catheter to her bladder pulled out. I guess they needed that so they could
measure her urine output to make sure she was staying hydrated and to determine
her kidney output. She’s eating again
and took almost 4 oz. for me tonight.
She had a slight fever, but didn’t appear to be in much pain. She appears to be tolerating this whole thing
really well. She actually looked pretty
good tonight.
December 19- Sarah
slept most of the day today. She was
moved out of the PICU into the infant ward.
When I got to her room, noticed she had been put back on oxygen and she
was saturating above 90%. That’s a
normal oxygen level for most people, but not for Sarah. With her heart problems, her average is
closer to 82%. She really doesn’t need
to be above that according to her cardiologist.
So, I pulled it off and shut it off at the wall. No need to pay for what isn’t required. I had to explain to the nurse that she
shouldn’t be saturating so high and that it was normal for her to be at a lower
level. Fortunately, it was the nurse
that made the initial call rather than the doctor, so she had no problem
leaving it off. I stayed with Sarah in
her new room most of the night. She was pretty
wound up the whole time I was there. I
don’t know if it was because of pain, or if she was just extra fidgety. She didn’t act like she was in pain, she just
wasn’t very comfortable I guess.
December 20- They
tried to get blood from Sarah this morning, but after four attempts they gave
up. Either Sarah is an extra difficult
case, or they just don’t have very good technicians. My wife showed up soon after the attempts and
was not happy when she got the report.
She is very sensitive to all the poking they attempt to do, so she went
straight to Sarah’s cardiologist and had him cancel the order so that no more
attempts would be made. It worked. Sarah’s neurosurgeon gave her a final checkup
this afternoon and then released her.
Everything went really well and recovery was right on track. Sarah is HOME and here to stay for a while. We were really blessed that everything went
so well with no complications. It’s
pretty amazing to me how fast she has bounced back from all these major
surgeries, despite the problems that still exist. She’s a pretty special girl and most
certainly, she’s being watched over by her Heavenly Father.
