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.

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