Diagnosis Day

Tuesday, March 25, 2014
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!