Friday, October 31, 2014

Quarterly Clinic Visit

Tuesday was a full day of appointments for us, the big one being our quarterly clinic visit.

One of the bigger changes that happened immediately was the method they're now using to get us into the exam rooms.  Earlier this year, the new, tighter infection control guidelines were accepted, which means our clinic had some changes to make.  We knew it was coming, but also knew it would take some work for them to implement it.  So instead of going to the main waiting room that we've gone to for the last 3.5 years, now we wait at the front of the office (with Judith masked, of course!) and one of the nurses comes out to get us as soon as possible, taking us directly to the exam room, where all of the vitals are done.

I really do prefer this method, and am glad our clinic is now doing it.  I've always been nervous in the waiting areas, because you don't always know who the CF patients are, and after talking to some other moms who go to our clinic I know there have been cases of parents who don't comply with the infection control guidelines and make their child mask up when they're in the main areas.  I am pretty anal about keeping Judith away from other kids in general when we're at clinic, because you obviously never know who has what and who could be a potential danger to her (and her to them), and just the thought of another parent not being fully compliant with the guidelines and potentially passing a bug to my kid kind of freaks me out.  In any case, with the new method of getting us into the rooms, this should hopefully eliminate more of the risk.

Going into the appointment, one of our biggest concerns was weight gain.  Our hospital recently set up one of the patient record access systems online, and our clinic participates in it, so having Judith's records at my fingertips and being able to look stuff up when I need to is really nice.  I knew when she was weighed at her nephrology visit at the beginning of September, she actually lost weight since her clinic visit in July, and didn't really gain anything since about April.  Her BMI also dropped, which had me even more concerned.  I had no idea what our team was going to suggest, but it turns out all of the worry was for nothing because Judith managed to gain about 3 lbs. in almost 2 months!  We also know the jump isn't due to a backlog in her intestines since her last x-ray a couple weeks ago was normal, so this gain is legitimate!

Judith's growth spurt wasn't just in weight, but also in length.  Since September, she grew about 1.75", and is now approximately 39" tall.  I thought some of her pants looked like they were already getting short!  She's weighing in at about 32 lbs. and a couple oz., and her BMI is somewhere in the 30th-32nd percentile.  So while her BMI still isn't at the optimal percentile (50th), she's now back on track for her normal and it's not in a zone of concern.

Since we've been working on potty training, I haven't had many opportunities to collect a sample to check the fecal elastice and get her numbers, plus they preferred to have it at their lab instead of us taking it to somewhere local and having other hospitals mess around with reporting results.  I was totally ok with that, because every other time we've done this in the past one of the local hospitals, which is also one of the few labs that will accept specimens, always screws around and never bothers to report results properly when the orders clearly state that they need to be sent to PSHMC.  Anyway, there's also the distance issue, since the sample would have to be frozen.  She's not showing signs of pancreatic insufficiency, so it wasn't an urgent thing to have done, but it's been over 2 years since we ran the last test and they want to see where her numbers are right now in case she may be headed in that direction.  We were able to get a sample on Tuesday, and her results should be back in 2 weeks or so.

As always, culture results will be pending for about a week.  I'm fully expecting the MRSA to still be present, but will be pleasantly surprised if it changes to MSSA, which is what we want it to do.

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