MOM'S JOURNAL 5/1/08
- Medication - Throughout our time in the hospital, I
learned to monitor Taylor's medication carefully. There
were several times where meds were changed on paper but
didn't get changed in practice, and some things that
were ordered that simply weren't wise (such as a
laxative when she was having diarrhea or a sucrose drip
when her glucose levels were too high.) As time went on,
I got to the point where I examined each pill in the
blister wrap (I asked them to bring it to me intact so I
could check) and double checked it against the
information I had written down in her daily log for fear
of her receiving something that was wrong. It happened
enough times to warrant my concern. Recently,
I refilled another medication, brought the prescription
home, and began to dose out medication as I always do.
But a little heavenly voice inside my head told me to
double check the prescription. The name of the drug was
the same, as was the dosing directions, but there was no
dosage amount for the drug. At first I thought I was
being silly, but I called anyway, telling myself that I
checked every single pill in the hospital so why should
this be any different. The pharmacy confirmed that the
drug was the correct drug and the dosing directions were
correct, but when she told me the mg dosage amount, it
was double what Taylor was supposed to be receiving.
Word to the wise - if you have a loved one getting
medication, keep a log of the medications they're on and
any changes made by the doctor, and check and double
check each and every time you fill a prescription
including dosing directions, drug name, and dosage
amounts. I
shudder to think at what could have been....
4/28/08
- Selflessness - An interesting word - a
complicated word to say and an even more complicated
behavior to emanate. I have been taken aback in so many
ways by so many people. There are those who I expected
to rise to the occasion, lending their support as
tried-and-true friends do, which they did with
consistency and determination. While their behavior is not
a surprise to me, their warmth, caring, and dedication to help is certainly
humbling and very much appreciated. Then there are those
that I had expected to be among the first group who have
been unexpectedly silent or who have withdrawn in
unexpected ways. I don't know the reason for their
reaction, whether they are uncomfortable dealing with
cancer or irritated and inconvenienced that our lives
and priorities have necessarily changed. There is also a
third group; those people who we may have spent a little
time with, met in passing, or have never met at all,
that have felt the need to connect and help. Their
reaction is surprising and I am awed at their
kindness and desire to assist a family that they barely
know or don't know at all. They say that crisis brings
out the true personality of a person. I don't know
whether that is true or not, but I do know that I have
witnessed both ends of the spectrum and everywhere in
between. To those who have chosen to withdraw or treat
us differently, I don't pretend to understand why you
feel the need to react this way, but then you probably
aren't reading this anyway. To those who have shown
unbelievable kindness, financial and emotional support,
your desire to share your time and efforts to help us
through this difficult time, and your offer to share
your emotional and physical strength with us is
awe-inspiring and humbling. It is to you that we owe a
huge debt of gratitude. Know that we consider you angels
on earth, and each and every one of you have touched our
hearts and souls with your selflessness. Your efforts
will never be forgotten.
4/25/08
- 3-D's; Dismay, Disbelief, & Daft - What an
interesting 24 hours. Yesterday the hospital called to
tell us that Taylor's CT and PET scan were scheduled for
today. The PET was to be done at 7:00 AM an hour's drive
away (though they wanted us there at 6:30 AM) and the CT
scan was to be done at 10:00 at Children's. I had a long
conversation with the scheduler about fasting, being
able to make both appts, what was necessary for both
scans, etc. We arrived at 6:30 as asked to find the
building totally locked up. We sat on the cold cement
bench and hoped that someone would come soon to let us
in. Our hopes were raised when we saw a truck pull up,
only to have them dashed as a newspaper whizzed by our
heads and landed with a plop at the front door, which
caused us to giggle in spite of the conditions. At 7:00
the building doors opened and we went into the office 15
minutes later. Dismay came when we were told that the
scheduler had actually made the appointment for Tuesday
rather than today. Fortunately, the front office was
compassionate and fit us into the schedule. Dismay
turned to disbelief when she told me that the approval
had been done for only a PET scan and not a PET/CT
combo, which was the type of scan they did at their
center. In addition, when she called Children's, she was
told that the CT scan was also scheduled for Tuesday.
While this was going on, I made my own call to the
scheduler who had the nerve to say "I know this is
a really tough time for you and little Taylor, so you
must have gotten confused." Confused about the
entire 5 minute conversation? I may be overwhelmed but I
didn't think I was THAT overwhelmed. I questioned the
need for a second CT, since she apparently was going to
have a combo test done, and she condescendingly told me
that they showed different things. Not what the PET
doctor was telling me, but okay. Just as she was
confirming that my CT at Children's was for today, the
front office person came in to in to inform me that she
had just confirmed that the very same test was confirmed
for Tuesday. Feeling slightly smug that I wasn't crazy
after all, I had the tech call down to radiology
directly to verify which was right. It was, indeed,
scheduled for today. The PET went fine and we kept the
IV in so she wouldn't have to be poked twice. Disbelief
turned to daftness when I couldn't stop shaking my head
and laughing because the whole situation was so
ridiculous. We made our CT appointment right on time and
finally she was able to eat once it was completed. At
the end of lunch, she felt really bad with sharp pains
in her abdomen and stomach. Since we were still right
there, we went to the clinic to have her checked. After
the exam, the doctor checked the CT results from this
morning and finally found the cause of her abdominal
pain - a condition with a very long name where one part
of her intestine apparently slides into another causing
pinching and pain. Finally an answer to the sporadic
sharp pains and discomfort! And Taylor was so relieved
to know that it was something tangible as they were
beginning to act like it was all in her head, and they
finally gave her medication that was successful at
diminishing her pain. There is always a silver lining!
Welcome to a day in the life. You're jealous, aren't
you?
4/22/08
- Twilight Zone - Well the webmaster finally gave me the
okay to post, so here I am. After the past two weeks I
feel like I'm in the Twilight Zone. Two weeks ago Taylor
was having odd side effects and was in a lot of pain and
we were asked to come to the clinic, which we did. Even
though they could not determine the source of the pain
or the effects, Taylor's levels were checked, she was
given Aleve, and was sent home. The next week we had the
same symptoms, no better and no worse, and they put us
in the hospital. Yesterday, Taylor had hallucinations
(floating doggie gates of all things, as well as
multi-colored spots and stripes), lips that looked like
they were burned with a curling iron, and more cramps
and nausea, and they checked her levels, gave her half
of a bag of fluids, proclaimed the blood results normal,
and sent us home again. I really wish I could figure out
what is "abnormally normal" and what is
grounds for admission. So far it makes no logical sense.
Each day is like a surprise party. You just never know
what it's going to bring... |
