Can't You Do Something By The Book? Just Once?

I'm frustrated.  Really, really frustrated.  There are many times when I'm glad that Judith's different, and her feisty & stubborn personality is behind her doing things differently than the norm.  This is not one of those times.

Remember my post from Monday about Judith's test results?  Well, you can color me completely baffled right now.  I don't deny the results - they did 2 tests on that 1 sample, and everything's normal.  We know that.  But then why did the enzymes make such a drastic difference?  And why, if things are normal, have things reverted back to the way they were pre-enzymes?  We're on our 3rd poo today, it's been a production each time to get it out, the color is not normal, it's getting bulky, and the last one looked a little greasy again (John changed the second diaper, so I'm not sure how that one really looked).  Some of the changes this week, specifically Wednesday, I thought were a combination of being off the enzymes and teething.  Today, that's been blown out of the window.

Naturally, Judith waits until office hours are over at the clinic and the weekend starts.  Lovely.  They have a nurse line for evenings and weekends, but I don't want to call them about something that's not really an emergency.  My anxious self wants to be able to discuss this today and see what needs to be done, but the rational part of myself is saying there probably isn't a lot that they can do for her, other than run more test (on what, I don't know) to try to pinpoint the problem.

I need one of those signs with a circle on it that says "Bang head here."

We Got the Test Results Back

This is HUGE: Judith is still pancreatic sufficient!  Woo hoo!  We can stop the enzymes with her next meal!

They're still going to monitor her closely because she had many of the symptoms of pancreatic insufficiency, and I did notice a difference in her poops within a day or 2 of starting the enzymes.  We still have a long road to go with this, as things can change at the drop of a pin, and the odds are still stacked against her.  But for now, it's one less thing for us to worry about!

Excitement!

Clinic, Screaming, and Enzymes... Oh My!

Yesterday we took Judith to the CF clinic to get her checked for the concerns I've been having with the change in her poops - she was supposed to go for her routine visit in 2 weeks, but her pulmonologist wanted it bumped up after I called them last week about her lack of weight gain.

We arrived at Hershey, and Judith enjoyed her ride in her stroller, acted perfectly normal checking in and in the waiting room, and was even interested in the nurses at first.  Then they made the mistake of attaching the pulse ox monitor to her finger, and she began to scream bloody murder (must've been that pesky cruciatus curse again...).  Nothing was making her happy/consoling her, and she howled for a good 5 minutes through the rest of her vitals and her weighing.  Doing the naked weight pissed her off even more, but at least we got an accurate weight this time: 18 lbs 7 oz - she did gain a bit, but definitely not enough in the last month alone, let alone enough to be adequate from her last visit.  Needless to say she's not on the charts again, and this symptom is lining up with everything else.

After the nurse left, Judith calmed down and played with one of those bead roller coaster things (you know, the kind where you push the beads around on the little twisted pieces of metal) that they have in the room.  Lucky us, she decided to poop while she was playing, saving us the task of collecting a stool sample at home!

She was fine the entire time the nutritionist and social worker were with us, but as soon as Dr. G walked in she started side-eyeing people.  We talked about all of her symptoms that she's been having, symptoms that prompted my concerns about possible pancreatic insufficiency and malabsorption.  Dr. G and the nutritionist both looked at her poop and said that by the looks of it and based off her symptoms, it looks likely that she is becoming insufficient, but we won't know for sure until the lab results come back.  They did say that this particular poop didn't look too bad (it wasn't one of her messier ones, and this was one time when I was kind of hoping that she would give a messier one so they could really see what's going on), but it's definitely giving them a red flag.

Dr. G examined Judith to make sure her lungs are still clear, and this prompted another scream fest.  He wanted to look in her ears, and it took about 3 of us to accomplish that task.  The throat culture was a little easier, as I managed to put her in a straight jacket hold so Dr. G could take the quick swab.  As soon as he left the room, she was fine.  He came back in, and she started fussing again.  And after leaving the final time, she calmed down.  It was hilarious!

Anyway, the team came to the consensus that it would be better to start Judith on pancreatic enzymes now, send the poop to the lab for testing, and once both tests are back (the one test takes about 2 weeks to run and send results for, and that tests the elastice in the poop - it's the more important of the 2, and will give us definitive results) we can stop the enzymes if need be, or we will be told to continue them.  This really was not a shock to me - with everything I've been seeing, I went into the appointment figuring we'd have to do this.  Now we just need to adjust to the changes in our routine, and remember to give her the enzymes every time she eats.