Tuesday, February 7, 2012

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.

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