Sunday, August 25, 2013

First Post-NICU Hospitalization, Part 1

We've been lucky that Judith hasn't had a lot of major issues post-NICU, and has avoided major interventions for her CF up until this point.  We're still lucky that things weren't as bad as what they could've been, and that she wasn't super sick, but I knew she had to be miserable.

I started to notice that something was off a few weeks ago after we visited my in-laws.  She ate an awesome lunch for us (which is a rarity these days), but didn't eat a lot for dinner.  At the time, I chalked it up to exhaustion from a busy day, and the possibility that she may have upset her stomach a bit after getting into some cat litter and drinking a small amount of water from a puddle on the farm.  That Saturday, she was cranky, and that Sunday she was extra cranky and really not acting like herself. Since John had a Sunday off, we decided to go to church with my grandparents, and they noticed right away that she was not acting normally, even accounting for the new environment.  We went out for breakfast after worship, and Judith refused to eat her pancakes.  That was another big sign that something was off because she loves her pancakes, and it's something I know she'll consistently eat, but I didn't really think too much of it in the heat of the moment.  She started to have a crying fit, and I told John I'd take her outside.  By this point, I admit I was starting to get really annoyed with her attitude, and sat her on an outside bench for time out for her behavior in the restaurant.  She had herself that upset that she puked all over herself and me, and I noticed that it was really mucusy.

Not having her glasses was making it hard to see, and that combined with whacking her head was making us think that maybe she did give herself a minor concussion, so we decided to end our visit early and take her to an urgent care facility 1 town away from where we live (my grandparents were really pushing for us to do it, because they were concerned by how unusual she was acting).  John and I took her for a check, and the doctor there said she was fine, but that the bump on her head would likely take some time to heal.  That night, she had a massive poop that was really loose, and I was figuring she should feel better after that because she hadn't gone in a couple days again.

Monday came, and Judith's poos were getting looser, more mucusy and watery, and the color was turning more orange.  Concerned by the change, and knowing the situation with the cat litter and the puddle, I called the pediatrician and talked to a nurse.  She said it sounded like toddler's diarrhea, and since Judith was really only drinking at that point, too much liquid was the likely culprit.  We tried to get her to eat more to balance out her liquid intake, and I even tried to get her to eat a couple bananas, but the diarrhea continued.

Getting more concerned by the consistency of the poos and the color (and the random, mucusy vomit Judith had one evening), I called the clinic next and talked to the nurse coordinator.  She listened to the entire story and took some notes, then said she'd run everything by Dr. G. and see what he thought.  Not long after we ended the call, she called back and said Dr. G. wanted me to take Judith to her primary pediatrician to get checked, and to try to get them to run a stool study.

Off to the pediatrician we went, and had to see a completely different doctor since Dr. W. didn't have any appointments that day.  This doctor examined Judith, and kept telling me that it was "just viral," and it took me repeating that Judith's CF team wanted a stool study done a few times before she finally wrote the orders.  This doctor probably thought I was nuts, but I wasn't about to leave that office without the stuff I needed to, at the very least, collect poo for testing the fecal fat.

That night, Judith was able to provide us with a sample, and I was mildly freaking out because the color went from orange to the color of clay.  Naturally I decided to google what that could mean, and it only made my freak out worse.  You'd think I'd know better, but apparently I'm a glutton for punishment.  Anyway, I took her sample to the lab the following morning (which was an "adventure" in and of itself, and that's another long story for another time), then sat back to wait for the results to be available.

I was glad that we knew the results from the bacterial and parasitic tests by the following Monday, and everything was negative.  I felt much better knowing we weren't dealing with something gross like giardia!  So we were back to waiting for the results showing how her pancreas is functioning.  In the meantime, the diarrhea still wasn't letting up, so I called the clinic again to see what we should do.  This time, Dr. G. was on vacation, so one of the other doctors had to take care of things.  He said to give her 2 capfuls of Miralax, 1 capful at a time and over a 2-3 hour period, and call back in the morning with how many times she goes and what the poo looked like.

I knew things would get ugly with all of that Miralax going into her system, but started bracing myself for the inevitable blowouts.  I decided to start the Miralax after her nap, and had it mixed in her pediasure, ready to go.  As soon as Judith took 1 taste, she figured out it was in there and refused to drink it.  Great.  It was a losing battle, and I called in the morning to tell them she refused to take it.

The team and I did discuss that there could be a possible blockage that was causing the diarrhea, and because Judith didn't take the Miralax, they wanted us to go to the ER at Hershey that morning so they could get an x-ray of her GI tract.  So this past Wednesday, my mom and I loaded Judith into the car, armed with little bribes (some new Chuggington engines) that I normally keep for minor/routine visits, and made the drive to Hershey Medical Center.


  1. Praying for Judith and your family! Our first post-NICU hospitalization came within a week of leaving and then our second was with in a week of leaving the second time! Any hospitalization is difficult!

    1. Oh no! I'm sorry you ended up back in the hospital so quickly after leaving the NICU. :(

      Thank you for the prayers!