Friday, August 30, 2013

Meds, Appointments, and A New Pediatrician

Earlier in the week, I expressed my... uh... frustrations with the pediatrician practice regarding the testing they did on Judith's poo.  I tactfully voiced my concerns at Judith's hospitalization follow up appointment Wednesday, and felt like they were brushing me off, so I talked to John and we made the final decision to switch to a different practice.  I called the new place the same day, and Thursday morning received a call back from the office manager to discuss things.  I was very pleased with the phone interview, and even though the new practice is much larger than the one we're coming from, they seem to have their act together better, they have a more efficient program in place for those with special needs, and their hours are absolutely awesome.  The only thing I had to do was switch Judith's secondary insurance to a different option because they don't accept her current secondary anymore, so if (and knock on wood this doesn't happen) she gets sick and has to be seen before October 1, we'll just have to pay our regular primary insurance copay.  We will, however, still be covered with all of her specialists.

Judith's CF team and I are still working on making sure her system's cleaned out and finding the proper dosage of Miralax to get her poo to the desired "ideal."  We're going to stick with the half cap twice a day routine for now, and I will take her for another abdominal x-ray so they can see if things are still clear in her GI tract.  I really need Judith to give me a good, dirty diaper that day as well so we can send a sample to the lab to get her exact elastice numbers so we can work out a monitoring plan for the future.

While I'm glad August is coming to an end and fall is around the corner, I'm not exactly looking forward to all of the appointments that are coming up, especially now that we have some extra ones thrown into the mix.  Judith has her follow up with the renal specialist to check on the calcification in her kidneys, she has her annual eye exam and we'll be ordering new frames (yay!), her big CF clinic visit with annual labs is quickly approaching, and now we have to add the x-ray, stool collection, and an MRI to the mix because they want to check something that turned up on her last x-ray when she was in the hospital.  I'm hoping that after all of this, things will go back to a more normal pace and will calm down a bit.

Tuesday, August 27, 2013

Checking for Pancreatic Insufficiency

... didn't happen.  I am FURIOUS with our primary pediatrician practice right now!  We didn't see our regular pediatrician almost 2 weeks ago when I took Judith in to have the tests run, but this doctor kept insisting that what Judith had was viral.  I know my child well enough to realize that this wasn't viral because the symptoms didn't line up with what they were like during previous viral infections, and her CF team seemed to agree with me.  It was almost like pulling teeth from an alligator to get this doctor to listen to what I was saying about her team wanting tests run to rule out various bacteria like giardia, and that they also wanted them to test the elastice in her stool to make sure her pancreas was functioning normally.  I also distinctly remember saying numerous times that her CF team was there to take her phone call if stuff wasn't clear or she doubted what I was saying and needed to double check with them.

Not once did the doctor leave the exam room to double check, but wrote out orders for a bunch of different tests and sent us home with the specimen kit.  I honestly don't care how arrogant this sounds, but dammit this doctor should've listened to what I was saying about calling her CF team to ask exactly what they wanted done, because she ordered the incorrect test!  On top of that, the office once again ignored the instructions from the clinic about faxing them copies of the test results, and I'm so over constantly tracking down the nurses at the pediatrician's office to get lab results and constantly riding them to fax them like they should've done initially.

Yes, I realize that doctors' offices are busy places, and they have tons of patients to worry about.  But how stinking hard is it to make a little note in the computer system to fax the lab results to the specialists that effing need to know some of the results of things you're testing for?!  The office had these lab results LAST WEDNESDAY.  That's right: the day Judith was admitted to flush out her system, her pediatrician had the lab results and didn't bother faxing them.  Faxing them would've allowed her CF team to see that the pediatrician ordered the wrong test, and we could've gotten a stool sample to send to the lab with her first dirty diaper after the Go Lightly was started (since that one wasn't liquid poo yet) and wouldn't have to wait even longer to see what her pancreas is doing.

I'm a fairly patient person, and generally very understanding of busy schedules and whatnot.  It happens.  But when the little things happen over and over again, it adds up, and then when something big happens it's the straw that breaks the camel's back.  I don't care for conflict, but something has to be said so they fix this and don't drop the ball again.

Monday, August 26, 2013

First Post-NICU Hospitalization, Part 2

As of Sunday, we still don't have Judith's pancreatic results, so we're not sure if things are still working normally or if we'll have to start enzymes.

I know Judith's CF team was being cautious and proactive, especially given her digestive and nutritional issues because of the disease and because of the pooping issues (including constipation) she's had since birth, but I had myself convinced that things were loose because of something else and not because of a blockage.

We arrived at the ER a little after 10:30 that morning, were triaged quickly, and taken to a room just as quickly.  The ER staff knew she'd be arriving since the clinic called ahead to let them know.  Judith was taken for her x-ray almost right away, and we knew the results relatively quickly.  The radiology tech and the pediatrician in the ER both said there wasn't an obstruction, but Judith had a "moderate" amount of poo backing up in her GI tract.  They had to send the results to Dr. R. (the pulmonologist on service, and who was covering for Dr. G.) to see what he said, and while we were waiting to hear back from him, they started doing a fuller history on Judith.  One thing that stuck out, and that the pediatrician kept coming back to, was that Judith had a meconium ielius about a week after birth when she was in the NICU.  He asked a lot of questions about it, and I was glad that I remembered as many details as I did.

In the meantime, my mom and I were trying to find ways to keep Judith entertained, and finally we turned on the TV so she could watch some shows on PBS while I offered her a drink of Pediasure from her cup.  Shortly after that, one of the nurses came in and said that Dr. R. had looked over Judith's scan, and said there was actually a significant amount of poo backed up.  Because of this and the fact that she was refusing the Miralax, he thought it would be best to admit her and flush her system.  I knew this was a possibility going into the ER for the scan, but was hoping we could avoid hospitalization.  I was nervous, because I had no idea what to expect with what they would do, and wasn't sure if Judith would freak out or not, but at the same time I knew that something had to be done and her team would take good care of her.

Stupid me brushed off packing a bag and my laptop in case we had to be admitted, so my mom had to drive back to my house, pack things for me, then drive back to the hospital (with my dad and John) with all of my stuff.  In the meantime, Judith and I were still in the ER, and the nurses started her IV and placed the NG tube so they could start the Go Lightly as soon as they got it from the lab.  I knew placing the IV was going to be a trip, but these nurses were awesome and really slick with the needles, and got it placed relatively quickly.  The NG tube was another story.  The last time Judith had one was in the NICU, so while I was very familiar with them and the placement, I had a feeling this would be an even bigger freakout for her than the IV.  My gut instinct was right, and Judith flipped out big time, complete with multiple mucusy pukes during her crying fits.  I really did feel bad for her, and tried to calm her down as best as I could.  Fortunately there were some wagons in the ER from the Child Life specialists, and one of the nurses got one for me so I could walk her around.  For a solid 45 minutes, we made loops of the pediatric section and the adult section, and Judith was busy charming the pants off of the staff.

By that point, my feet were hurting and I was tired of walking, so I took Judith back to her room.  Her Go Lightly had also arrived, and the nurse said we could start it whenever we were ready.  Judith needed a nap, and I was hoping she'd sleep, so I said we could start it.  I settled her in while the nurse got things hooked up and started a bag of fluids in her IV, and turned on some children's shows so Judith could watch while she fell asleep.  Go figure she never did nap, but at least she had some quiet time.

I was hoping we'd be able to get a room before my parents and John arrived, but that wasn't the case since the new children's hospital was pretty full.  My parents brought dinner for me (I hadn't eaten since breakfast), and by the time I ate and everyone came in for little visits, one of the nurses said they finally had a room for Judith and we would be transported shortly.  After a little more than 7 hours in the ER, we were going to get settled in.

While it's obviously no hotel, the rooms in the new children's hospital are NICE.  They're all private, and 2 parents can stay at the bedside if they wish.  John had to work, so I was the only one staying with her, but it was nice having such a spacious area to be in!  I had already changed 1 poopy diaper in the ER and was waiting for another one to come, but while I was waiting I got myself organized and things put away for the night.  I also met Judith's night nurse, and she was absolutely amazing!

Judith fell asleep quickly after John and my parents left, and soon after that I got into my jammies, settled down with the laptop, and turned on Duck Dynasty.  I was hoping to stay up a little later, but was physically and mentally exhausted so I decided to turn in.  Big mistake.  I should've stayed up a little longer, but thankfully wasn't fully asleep when I heard Judith stirring and trying to flip onto her stomach to sleep since that's how she normally sleeps.  I flipped her over, then heard the Go Lightly fully kick in.

I kid you not, this was the blowout of all blowouts.  If you've ever seen the Luvs commercial with the "pooping contest" to show how much their diapers hold, think about what the "10" looked like and double it.  If Judith had been in that commercial, she would've gotten a 20.  There was liquid poo EVERYWHERE.  Up her back, all over the linens, running down her leg and coincidentally ruining one of her new pairs of socks that I put on her since her feet were cold (those went into the trash as I didn't care to have them back).  We were fortunate that none of her toys or her Thomas blanket were hit, but I did remove them from her bed so none of them would be ruined as more blowouts happened overnight.  Judith was super pissed because of the blowout, but was even more upset when she realized I removed her Thomas blanket.  I felt horrible doing it, but I would've felt just as horrible if Thomas had gotten ruined by all of the poop and she would've lost him that way.

That blowout was horrific, and while there were certainly more that night and into Thursday morning, the others weren't quite as bad.  At least there was no question about if the Go Lightly was working.

Thursday morning, Judith's nutritionist stopped by, and we had a good discussion about different tactics to try to see if we can get Judith eating more and get her to gain more weight.  Her nutritionist was also surprised to hear that Judith had a meconium ielius while in the NICU, and that was the moment I realized that her CF team probably didn't get her NICU records like I had requested.  I have a feeling this might be a bit of a game changer, but at this point I'm not sure how much of an impact it will have.

As Thursday went on, her poo started to get closer to the state that Dr. R. wanted to see, and by evening I was hopeful that Judith would be able to get out of there on Friday.  We had the same night shift nurse that we had Wednesday night (yay!), and after she saw what the diaper looked like, she called Dr. R. and he ordered the next scan to make sure Judith was cleaned out.  Her nurse was able to stop the Go Lightly, and Dr. R. gave the ok for her NG tube to stay out since Judith was finally successful in yanking it out on her own.

I was hoping to get a little more sleep Thursday night since I was up pretty early that morning (thanks, random 5am thunderstorm), but it didn't quite happen that way.  I was still getting up for practically every diaper change, and got up again around 1:30am Friday when the radiology team came in to do her x-ray.  After tossing and turning for a bit and listening to Judith shift around in her bed, we both slept more soundly and started our day around our normal time.

Friday morning rolled around, and things were looking very promising for discharge that day.  Her x-ray looked really good, and Dr. R. wanted her to get some solid food into her system to make sure she could tolerate it.  Judith actually said, "I'm hungry!" earlier in the morning, and destroyed a cup of apple juice and a cup of orange jello, but still had plenty of room for more.  I got a wagon from the Child Life team and walked her around the floor for a bit until lunch time.  I was very pleased to see her eating close to her normal levels, and knew that as long as she kept everything down we'd be out of there in a few hours.

By 3:30 Friday afternoon, we were able to leave the hospital!  I know that so many kids have to stay longer, and there may be a time when Judith is going to have an even longer stay, but it was nice to be out of there within 72 hours.  The whole way home, Judith kept asking to "go see the doggies," so I knew she was feeling much better.

This was certainly quite the experience for Judith and for me, but at least I know what to expect if we have to go through this again.  She's been doing relatively well this weekend, and I'm hoping we can get her system regulated and adjusted to the new daily Miralax dosing that she's going to be on for a bit.

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.

Friday, August 23, 2013


It's been quite a while since I updated, and things got even crazier after the adventure we had with Judith whacking her head.  Very long story short, we were dealing with a week and a half of diarrhea, and went through the gamut of possibilities including possible giardia, c. diff, e. coli, and even pancreatic insufficiency.  Turns out Judith was actually pretty significantly backed up, but didn't have a bowel obstruction, and was "squirting" around everything else.  We just got home this evening after a 3 day stay at Hershey Medical Center's new children's hospital so Judith could get cleaned out.  I have never dealt with so much poop in my life, and it was certainly... interesting.  Apparently this situation isn't a super unusual thing to happen to a CF patient, but it's something I hope we can try to keep at bay so Judith doesn't have to go through it again anytime soon.  I felt horrible for her (and for the nurses, because some of those diapers were horrifying), and knew she was miserable.  But the good news is we got her cleaned out, and we're home.  We're all also exhausted, and I can say that both Judith and I are looking forward to sleeping in our own beds tonight.

I'll type up a more detailed entry or 2 over the weekend chronicling our adventure.

Sunday, August 11, 2013

Life Is Rarely Boring Around Here

This weekend was certainly no exception to that.  I should've taken it as a sign that it was going to be an interesting 3 days when I woke up Friday morning and saw how dark it still was outside thanks to the rain and storms moving through the area.  John had taken a day off, and we decided to go visit his parents and check out the "Free For All" event at their church (they hold it every year, and it's like a big yard sale except everything's free).  Last year we scored a bunch of clothes for Judith, and were hoping to do the same this year and try to get some stuff in advance so we could prepare for next year.  Anyway, John knew the target time that I wanted to leave by so we could drop the dogs off at my parents' house for the day and get to his parents' house early enough so we could try to get some good deals at the free for all, but in typical fashion of his side of the family, 80,000 different things had to happen to delay our departure and throw off the rest of the day's plans.  We were basically ready to go, and just had to load a few more things in the car when the toilet decided to clog and overflow in the downstairs bathroom.  It was really a minor thing, and it flushed fine after that, but it was enough that John had to clean things off and mop the floor while I entertained Judith enough so she wouldn't try to go in there while things were still gross.  1 clean bathroom and 1 shower later, we were finally on the road and had an uneventful (thank goodness) trip to my in-laws'.

Judith's not exactly a fan of big dogs, partially because she's not used to them and partially because many of them are bigger than her and intimidate her, so she was a bit cranky as soon as we walked in the house because the boxer was trying to kiss her and play with her in his excitement.  She was warming up to him a bit, but would still get annoyed when he would pest her.  During her vest treatment, he was hanging around her, and next thing I knew I heard her crying and John declaring that we had an issue.  Apparently Judith got knocked into a piece of furniture and whacked her temple on the unpadded part... with her glasses on.  She had a small cut on her forehead, a super nasty bruise on her temple (which is still there and will likely be there for a while), and completely destroyed her frames.  So much for making it to her annual exam in September without needing a new pair of frames!  I called her ophthalmologist and they ordered a new pair right away, but they probably wouldn't come in until Monday at the earliest.  I swear, this stuff only happens on the weekends when you can't get a speedy repair!

The rest of Friday was relatively uneventful, and Saturday wasn't too bad save for Judith being really cranky and continuing to look for her glasses.  Today, on the other hand, was pure hell.  She's sensitive to bright light normally, but it was worse because of the pounding headache she has to have from the head injury.  Because of the new symptoms cropping up, we took her to urgent care and had her checked out.  Everything looks good, and she doesn't have any other signs of a concussion, but it's going to take a long time to heal.  So between the pain from the injury and the sheer frustration of not being able to see, Judith's been absolutely miserable.  I'm hoping that once we get her new frames and she starts wearing her glasses again, it'll cut back on some of the tantrums and take some of the edge off of her headache.

I'm also hoping that this coming week won't be nearly as stressful, but we'll have to wait and see how that pans out.

Thursday, August 8, 2013

Fun at a Bounce House

Yesterday I met up with a group of mom-friends that I met online, and we had a get together at a local bounce place.  It was the first time Judith has been at a place like that, and she had a blast!  Given the location of this particular venue, I was trying to figure out how they got all of the inflatable equipment inside, but once we were in there and I saw how expansive it really was, I was impressed.  It's about $8 for a 2 hour session, and it's all open bounce during regular business hours so that's a big bonus.

It took Judith a bit of time to figure things out, but once she got going she had a great time!  When we first got there, there was a large group of older kids bouncing around, but it was pretty awesome to see some of the older kids helping out Judith and some of her other little friends!

I'm really grateful that we went to this place instead of trying to do what we originally planned (we thought about going to a local zoo, but the weather was really iffy, so we opted for indoor activities to be safe), because now I discovered yet another place that we can go to this fall and winter when it's too cold or nasty to be outside.

She was so eager to get into the moon bounce that I forgot to take her glasses off.  Oops!  Thankfully we didn't have any incidents and I didn't have to take her for a frame readjustment.

The toddler structures were a huge hit...

... as were the slides!

Thursday, August 1, 2013

Happy Birthday, Buster!

Buster turned 8 today!  I can't believe that my boy's getting so old.  I hope he has many more years with us, though!

To celebrate, Buster spent the day eating snacks (hand fed to him by a certain toddler who thinks it's hilarious that he begs and that she can feed him), getting scratches, playing with Lady a couple times, and taking some good naps.  In other words, things weren't much different than any other day for him with the exception of being another year older ha ha.

In all seriousness, I've noticed that he's becoming grayer in the face over the last year, and he's starting to get more white fur appearing down his back.  From the moment we adopted Buster and Lady, he's had white and gray flecks throughout his facial fur, but it's much more prominent now.  Buster never was a super active dog, and has always turned laziness into an art form, so it's hard to say if he's really slowing down but I have noticed that his bursts of energy aren't lasting as long and aren't as frequent.  Still, save for the pinched nerve in his neck that acts up every now and then, he's in great health!

Happy 8th birthday, Buster!