The title of this post is a little bit of a misnomer. The
fact is that it was about 36 hours or so before we were told everything about
Samantha’s situation. Most of that process was due to the need to do PFTs
(Pulmonary Function Test), something that Alicia will talk about in the next post.
Since this was the first time we had been admitted to a
hospital via an emergency room visit, I didn’t know exactly what to expect.
However, what I did expect was for the hospital to treat it like the emergency
they were claiming. Instead, I got…well…nearly 36 hours worth of delays. We
went the entire first night there without talking to an actual pulmonary
doctor. The resident was a sweet young woman who talked with confidence, but
she knew her limitations. The respiratory therapist was a good guy, but knew no
more than I did about cystic fibrosis.
In short, that night stunk. I won’t revisit it for you. You
can read about it
HERE if you haven’t already.
Needless to say, we were anxious for an answer. The only
thing we knew from the ER in Lake Forest was that they wanted to find out if it
was a virus causing CF-exacerbation-like symptoms, or if it was an actual
exacerbation.
My initial understanding was that hospitals want to find
this sort of thing out quickly. My experience has taught me otherwise. We waited until somewhere around 9:00am to
even talk to the day resident about what she thought and the attending doctor
didn’t come around until about a half hour to 45 minutes later. It wasn’t until
10:30am that we learned what they thought…over 12 hours since admitting Sam.
The attending was wonderful. He was a very well-spoken
gentleman who clearly had the respect of his residents and other staff. He
included me in the rounds and included Sam in the process as well.
When he brought me out to the meeting for rounds, he turned
things over to one of the residents, but kept very close charge on everything.
He would gently correct her if she was saying something wrong, and encourage
her when she was presenting her diagnosis.
When I first heard the word exacerbation, I had to make sure
I was hearing things right. It just couldn’t be! Our daughter had been so much
sicker the year prior. This just didn’t make sense to me. Despite a rough
night, I figured we needed 1 or 2 days in the hospital and we’d be sent home.
Hopes were quickly dashed. While they thought it was
probably an URI (Upper Respiratory Infection) that caused the exacerbation,
they did feel pretty strongly that it really was a CF exacerbation, which meant
a 10-14 day tune-up. This was discouraging, to say the least. I kept trying to
ask questions that would lead back to a shorter timeframe for treatment, but I
kept hearing the same thing.
Then the attending talked about the PFTs that wouldn’t even
happen until later that afternoon! Ugh. When I think about getting something
done, I don’t think about putting it off until later. Alas, I had to be
patient.
There was one place where I put my foot down though, and
countered the medical team. Samantha had just had a full glucose screen on the
3rd of March, yet the team wanted her checked for blood sugar levels
before every meal a scant three weeks after that full screen. Alicia and I felt
this was uncalled for, though the nurse said that it was standard practice.
“I’d like to ask a question here,” I said.
“Sure,” the attending said. “Go ahead.”
I explained the recent glucose screening, including the
results so they would know I knew what I was talking about, and then said, “I
would really like to avoid pricking her on top of everything else we’re doing
when it’s pretty clear that she doesn’t have CFRD (cystic fibrosis-related
diabetes).
The residents looked at the attending…I looked at the
attending.
“I agree,” said the attending. “Dad’s right. Let’s forget
about the blood sugar levels.”
I felt good about that decision. After the last
hospitalization in May of last year, where I had been so frustrated at times
with the staff, yet quiet about it, I felt like I needed to be more vocal this
time. Thanks to that talk, Sam hasn’t had to have an extra procedure.
Of course, this was only the first step in the diagnosis.
While they believed it was an exacerbation, only the PFTs would tell us how
much trouble she was in. Alicia had arrived to relieve me by the time Sam was
getting ready for PFTs, so I’ll let her tell the rest of the story of her
diagnosis. Check back tomorrow for the rest of the story of diagnosis day!
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