Friday, July 18, 2014

Our Recent Inpatient Adventure

As you already know, I tend to talk about poop.  Sometimes a lot.  Ah, the life of a CF mom!  So if you're keeping score on poop posts, go ahead and add another tally to that list.

Last wee, I fully admit that our meals weren't always the greatest in the evening.  Well, at least mine weren't.  Judith still had some great meals at VBS at our church.  Even so, she didn't eat anything that typically binds her up and causes her to get really constipated.  Yet by Saturday, she was already going on day 2 of no poop, and by our clinic visit on Monday she was on day 4.  Poop is always something we discuss at clinic because it's one of those things that can tell us how she's doing, and I made sure to mention the lack of poop rather quickly.  We had to do labs anyway, so Dr. G. added a KUB to her x-ray list.

The rest of the visit went relatively well.  Judith was extremely cooperative in the triage room for vitals, and was even telling the nurse everything she had to do (smart kiddo!).  However, she did decide to hide in the cabinet under the sink when Dr. G. came into the room because she kept claiming she didn't "need a checkup."  She's such a stinker like that, and it gave everyone a good chuckle.  We got her cultures, she got 3 stickers and a lollipop, and she was happier... at least for a bit.  Labs are never fun, but at least the lollipop distracted her long enough for us to walk over to the lab.

A half hour, 3 sticks with butterfly needles, and 2 finger sticks later, the phlebotomists got enough to send for testing.  This time, these ladies were slick (unlike others we've had in the past where I was seriously questioning how many peds patients they've stuck), but Judith's veins just did not want to cooperate.  We got what we needed, though.  Then we got her x-rays: lungs are still as clear as always, but we found out the following morning that there was quite a stool load hanging out in her intestines again.  I wasn't really surprised by that considering by Tuesday she was going on day 5 of no poop.

Tuesday morning I called our CF nurse to get the results, and she said that everyone talked it over, and they were willing to prescribe and let us try some fleet enemas at home, or we'd have to bring her to the hospital to do another inpatient flush.  Initially I thought we could try the fleets at home to save us an inpatient stay, but John and I decided to pass on that level of fun, particularly because the house is on the market and neither one of us really had a burning desire to be cleaning feces off the floor (or anywhere else it might hit, for that matter).  So inpatient we went.

Dr. G. ordered a barium enema that we did while we were waiting for a bed to become available, because he wanted to rule out Hirschsprung's.  That scan looked clear, so we know that's not contributing to the overall issue.  We got settled into a room relatively quickly after we finished the barium scans, and then we faced the fun of trying to place an IV.  Last year, it was no problem and the nurses in the ER got it in super fast.  This time was a complete 180.  It took 2 different people and 4 sticks for them to finally get a line placed.  They would've had it on the 3rd shot, but something happened (my MIL was explaining that sometimes the IV can go the whole way through the vein and make it unusable, so I have a feeling that's what happened) and they had to go for a 4th stick.  I have no idea what they would've done if they couldn't get it in that time, but I was thisclose to telling them to give her a break and trying again later that evening.  I also feel a little guilty, because I got sarcastic and snarky with one of the ladies over a passive-aggressive comment she made.  The first lady would only stick her twice, and was getting pissed because Judith would move.  After the 2nd majorly failed attempt, she threw up her hands, declared herself done, looked at me and said, "I wouldn't have a problem if she'd stop moving.  You need to talk to her and MAKE her understand she can't move a muscle!"  I looked at her and said, "Yeah, well, she's 3 so good luck with that."  I don't think she cared for my response too much, but come on.  Judith has to be in the toddler beds yet, and this lady works in a freaking children's hospital so you'd think she'd be used to this kind of thing.

Anyway, the team Judith had decided to take a more conservative approach to start, and tried using fleet enemas and miralax to attack the blockages from the top and bottom.  Judith didn't drink the miralax, which didn't surprise me, and they wanted to try to get her out of there as quickly as possible, so we ended up having to get an NG placed and start Golytely to break things up further.  The barium helped, and the fleets did help break up the spots that were really low, but the golytely was needed for the higher spots.  The nurses started that Wednesday mid-day, and by about 3 or 4 AM Thursday morning, were able to completely stop it.  Overall, we were there almost as long as last time, but once the golytely was started the entire process did move faster.  And knowing what to expect this time helped as well.

Follow up this time is going to be interesting.  Because of the size of the blockages, there is a big part of the colon that is really stretched out and will take a while to go back to normal.  So we're going to have to do monthly x-rays to make sure that things are still moving, and we have her on 2 caps of miralax daily to assist with that.  The GI team that was following her in the hospital said it's likely that we could end up inpatient again sometime soon (like within the next 6 months) to clean things out again as her colon bounces back, but her CF team and I are doing everything we possibly can to avoid having to do that again.

This stay was, emotionally, harder than the previous one.  I was bummed that we were right back to square one from approximately this point last year, and Judith was extremely unhappy because now she really understands what's going on, and remembers more.  I did joke that maybe we should make a standing appointment for sometime within this 1 month block every year to do a clean out since it seems to be Judith's preferred time to back up.  Realistically, though, seeing this happen again in a little less than a year just kind of cemented the fact that Judith's issues, at least right now, are heavily GI related, and that we're going to be challenged by them for a long time.  There's no way to really tell or predict how frequently we'll have to go through this, or if we'll get longer stretches between clean outs, but for now we're focusing on keeping things moving as best as we can and trying to do as much of it at home as a part of her daily maintenance so we can avoid going inpatient too often.

As a small tag here at the end, I have to give a huge shout out not only to our CF team, who is as awesome as always, but to the fantastic doctors and nurses that took care of Judith during her stay.  The doctors were great at taking the time to explain things to us, and her nurses were more than willing to take it a step further and explain things even more if I had questions.  They did a fantastic job with Judith, and that's something I always appreciate!

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