If you've followed our journey for a while, you may be thinking that it should've been time for Judith's next quarterly CF visit. You would be right, and if you weren't thinking it, well, we had our latest quarterly visit last week. This one was different, though, as there are a lot of changes and adjustments happening.
Before I talk about how her visit went, I want to take some time to explain the back story, especially since I realize it's been almost 2 months since I last posted.
We've been patients at the CF Clinic at Penn State Hershey Medical Center ever since Judith was first diagnosed in April 2011, and both of her inpatient stays to date have been in their Children's Hospital. Our CF team, consisting of her pulmonologist, CF nurses, respiratory therapists, dietician, and social worker, was a good team, and we were mostly happy with the care she was receiving. Mostly. If you know anything about CF, you'll notice that there is something major that is lacking from the care team: a gastroenterologist (GI) who specializes in CF. Yes, PSHMC does have a pediatric GI program, but none of the doctors are also specialized in CF.
For Judith, whose CF presentation leans more heavily toward GI issues, with pulmonary issues being the second presentation, this was a problem. I know it's a problem for other patients at the clinic as well, as many of the parents in our support group have pointed out. One of the moms led a campaign to try and get a CF GI on staff, and as far as I know this is still a work in progress. I did help by writing a letter, but after months to almost a year of discussion between John and I, we ultimately decided that we can't continue to wait for the needed specialist to come along, especially since Judith's GI and weight issues aren't under control, nor have they been for a while. Our pulmonologist, whom we truly liked a lot, was trying his best, but it boiled down to the fact that he's a pulmonologist, not a GI specialists, and there's only so much you can do when you're starting to get further out of your league of specialty and knowledge.
This means that, to get what we need, we had to switch clinics. We could have opted to keep Judith's pulmonary care at PSHMC, but, since we know we'll be seeing developmental pediatrics at The Children's Hospital of Philadelphia (that's a story for another post) by the end of this year or beginning of next year, it was easier for us and the new team to have all of her care in 1 place. While we were sad to leave our team at PSHMC, we feel better knowing that we'll have all of the specialists she needs for her CF care.
Now, back to her visit. The drive into Philly actually was not bad at all, and I know that this was purely because of timing; since we were going midday, we avoided the nightmares of rush hour traffic on the Schuylkhill Expressway and other major highways en route to CHOP. Finding our way around the building was interesting, because it's massive and we're used to a smaller campus. Now that we know where we're going, it should be easier!
The visit was longer than what we're used to, but Judith will adapt; our past appointments were typically about an hour, sometimes slightly longer, but this time we had a few hours to pass in the exam room while each team member came in to talk to us and check her out. All that to say, I need to come up with an arsenal of entertainment items for her so she doesn't get too bored!
The pulmonary part of her visit went really well! Her new pulmonologist didn't detect anything unusual in her lungs (meaning they sounded clear), so the increased treatments we've been doing due to respiratory infections seem to be helping. We're proceeding as normal for now. We're waiting for her throat culture results, and I'm keeping my fingers crossed that nothing new turns up.
The GI part of her visit was more of a mess. I want to start by saying that both John and I really like her new GI doc, and she was really, really good with Judith! We have some bigger issues on our hands than I thought, though, because Judith actually lost 2 lbs. since she saw a general GI at CHOP in November. New eating behaviors have cropped up over the last few months, one of them being that she often won't eat dinner, mostly by choice, but sometimes because she falls asleep early in the evening, and doesn't want to wake up to eat. I was expecting Dr. M. to want to run a bunch of tests, but I wasn't quite expecting as many as she ordered; she wants to screen Judith for zinc deficiency and Celiac disease, and also ordered a gastric emptying study to make sure that food is passing through Judith's stomach in the time frame they'd expect or if it's delayed. And naturally, because of how CF affects the pancreas, we're going to run another fecal elastice test to get current numbers and see how well it's functioning.
I have a feeling that we'll be opening dialogue about g-tube placement soon, because Judith's percentiles keep fluctuating for BMI and weight. This is another thing John and I have discussed at length, so if/when the team brings the topic up, we're ready and prepared for it. I did mention something about it at her appointment, and Dr. M. wants to wait and see what some of the test results look like before we seriously discuss placing a g-tube, but we know that moving forward with the surgery for placement is definitely in the realm of possibility at this point. Granted that's going to be another huge adjustment for us, moreso than the adjustments we had to make when we added pulmozyme and hypertonic saline to the routine, but I feel confident that we'll adjust quickly, especially since we've already accepted it as a potential solution. At this point, we're all for anything that's going to help us get the necessary calories into her so she can build up her weight/get some reserves in her body so when she is sick and loses weight it's not a critical situation like we're in now, and since it would have the added bonus of removing some of the battles surrounding food and meal times, it's going to relieve some daily stress and tension from those times of each day.
Showing posts with label GI issues. Show all posts
Showing posts with label GI issues. Show all posts
Monday, February 1, 2016
Tuesday, March 10, 2015
The Neverending GI Story
This is another post about poo. I want to give fair, advanced warning for those that may not care to continue onward.
Still reading? Cool.
As you may remember, we're still working on potty training Miss Sassypants. She was doing really well with pooping, and we knew the miralax was working and keeping her cleaned out. Recently, though, she started exhibiting some behavioral issues in regards to elimination, and started holding it in instead of letting it go. We all knew she had to go, including Judith, but she would try and hold it in until the next day and was miserable as a result.
Now we're having the additional problem of increased mucus production because she appears to be brewing yet another respiratory infection. All of that mucus her vest shakes out of her lungs has to go somewhere, and there are basically 2 options: spit it out, which is something we're going to start working on so she can then start learning how to huff cough; or swallow it, which is typically what young kids do until they learn to spit it out. From there, it has to get out somehow. Sometimes if it's really bad and upsetting her stomach, she'll vomit it out. Most of the time, though, the only exit point is through her intestines, and that leads to some really mucusy poo. The other problem with this? If it doesn't exit, it hangs out in her intestines and blocks things up/slows things down.
Over the weekend, we knew she had to go, but it just wouldn't work it's way out. I started to panic Monday morning because we were starting day 2 with no results, and I was concerned she was backed up. 1 phone call to clinic later, and we got the green light to start an at home clean out with multiple doses of miralax.
We loaded her up, and she kept trying to go, but was saying it was stuck, and eventually started saying that it hurt. By 7:30, she started screaming and straining. This has happened a few times in the past, most notably when she's had the 2 significant blockages that required inpatient clean outs, so I figured we could be in for a rough hour or 2 while she tried to pass whatever was sitting there. But once she did go, the screaming didn't stop. This wasn't the typical backed up poo, but we couldn't find evidence of anything else happening, like a rectal prolapse.
I knew I needed to call clinic and ask them about other possibilities, and the first thing they thought of based off my descriptions was rectal prolapse. So my line of thought wasn't too far off base, even though we didn't see anything. It's very possible that it could have happened, but retracted quickly once she relaxed. We're certainly going to have to keep an eye on it, but it sucks that this is even remotely in the realm of possibility for her. It's something that I've been concerned about for a long time since she's always had to strain to go, but if it is starting to happen and as long as it's retracting on it's own, it shouldn't be as problematic as it would be if it weren't able to retract.
Today has been a much better day for her, and I'm hoping that the higher doses of miralax will keep things moving and help push back at the mucus that could be building up in there.
Still reading? Cool.
As you may remember, we're still working on potty training Miss Sassypants. She was doing really well with pooping, and we knew the miralax was working and keeping her cleaned out. Recently, though, she started exhibiting some behavioral issues in regards to elimination, and started holding it in instead of letting it go. We all knew she had to go, including Judith, but she would try and hold it in until the next day and was miserable as a result.
Now we're having the additional problem of increased mucus production because she appears to be brewing yet another respiratory infection. All of that mucus her vest shakes out of her lungs has to go somewhere, and there are basically 2 options: spit it out, which is something we're going to start working on so she can then start learning how to huff cough; or swallow it, which is typically what young kids do until they learn to spit it out. From there, it has to get out somehow. Sometimes if it's really bad and upsetting her stomach, she'll vomit it out. Most of the time, though, the only exit point is through her intestines, and that leads to some really mucusy poo. The other problem with this? If it doesn't exit, it hangs out in her intestines and blocks things up/slows things down.
Over the weekend, we knew she had to go, but it just wouldn't work it's way out. I started to panic Monday morning because we were starting day 2 with no results, and I was concerned she was backed up. 1 phone call to clinic later, and we got the green light to start an at home clean out with multiple doses of miralax.
We loaded her up, and she kept trying to go, but was saying it was stuck, and eventually started saying that it hurt. By 7:30, she started screaming and straining. This has happened a few times in the past, most notably when she's had the 2 significant blockages that required inpatient clean outs, so I figured we could be in for a rough hour or 2 while she tried to pass whatever was sitting there. But once she did go, the screaming didn't stop. This wasn't the typical backed up poo, but we couldn't find evidence of anything else happening, like a rectal prolapse.
I knew I needed to call clinic and ask them about other possibilities, and the first thing they thought of based off my descriptions was rectal prolapse. So my line of thought wasn't too far off base, even though we didn't see anything. It's very possible that it could have happened, but retracted quickly once she relaxed. We're certainly going to have to keep an eye on it, but it sucks that this is even remotely in the realm of possibility for her. It's something that I've been concerned about for a long time since she's always had to strain to go, but if it is starting to happen and as long as it's retracting on it's own, it shouldn't be as problematic as it would be if it weren't able to retract.
Today has been a much better day for her, and I'm hoping that the higher doses of miralax will keep things moving and help push back at the mucus that could be building up in there.
Tuesday, October 14, 2014
Latest X-Ray Results
Everything still looks good! I'm waiting to hear back from our CF nurse to see if we need to do any more for monitoring purposes, but I'm hoping this one is the last one we'll have to do for a while. The current dosing of the miralax seems to be keeping things moving well, which is good.
Judith's also been doing well with pooping on the toilet, and is mostly successful! I still have her in diapers or a pull up during the day, but it's been so nice not to have to change a diaper full of nasty CF poo every day. She still has some accidents and will go in her diaper, but it seems like the majority of her poops are going into the toilet. Hooray! The biggest issue is getting her to tell us before she has to go, and working toward that is our next step.
Judith's also been doing well with pooping on the toilet, and is mostly successful! I still have her in diapers or a pull up during the day, but it's been so nice not to have to change a diaper full of nasty CF poo every day. She still has some accidents and will go in her diaper, but it seems like the majority of her poops are going into the toilet. Hooray! The biggest issue is getting her to tell us before she has to go, and working toward that is our next step.
Tuesday, September 9, 2014
Appointments, Appointments, and More Appointments
To say the month of September is packed full this year is an understatement. We have a slew of appointments happening, which wouldn't be quite as bad if we didn't have to go for the regular x-rays to make sure Judith's bowels are un-dilating and going back to normal, but it's still a lot on top of the numerous plans and activities we have scheduled for the month.
Yesterday, Judith had her annual follow up ultrasound on her kidneys, and an appointment with nephrology. This was to check and monitor the calcification they detected on her kidneys a couple years ago, to make sure things didn't get worse. We knew going into the appointment that if things remained the same or improved, we would be discharged from their services. I was very pleased to hear the doctor come into the exam room and say that everything looks the same, that they will attribute the problems to her prematurity (which apparently this isn't totally unheard of for some preemies), and will be discharging her from services!
If there's 1 thing I like, it's to be able to eliminate and knock a specialists off of the already long list that we see. Especially since I know that the odds of adding more as the CF progresses is high.
The ultrasound was an interesting occurrence, and Judith did spend a fair amount of time during the scan crying and screaming in terror. She had herself convinced that we were "just getting an x-ray," even though I explained that she was getting a different kind of picture taken that used a magic wand instead of a big camera to see her insides. To say she was not amused with the scan is an understatement. All things considered, it went well, but both my mom and I were exhausted because it takes a lot out of you trying to keep Judith still so the techs can get the shots they need.
Coming up later in the month, Judith has her next x-ray, and if that still looks good, we may only have to do 1 or 2 more before we can discontinue them (and hopefully won't need them again for a while). I am concerned by the amount of radiation she's been blasted with since mid-July, including the multiple x-rays she had while inpatient, and will be relieved when she can get a break from all of that.
We also have her annual eye exam, which could prove to be an interesting experience since I know they'll dilate her eyes. But Judith is so excited about being able to get new glasses that it's making me more excited to get her some new frames as well. If I knew we could keep her current frames longer and still have a valid warranty, I'd do it, because they're in really good shape and she doesn't seem to have outgrown them. I can guarantee that I'm getting the same brand, because it has been absolutely fantastic not having to worry about her snapping something constantly and going for repairs every few weeks! The most I've had to take her for were some adjustments to the nose pieces, and in the last year I think I can count on 1 hand how many times that has happened.
Yesterday, Judith had her annual follow up ultrasound on her kidneys, and an appointment with nephrology. This was to check and monitor the calcification they detected on her kidneys a couple years ago, to make sure things didn't get worse. We knew going into the appointment that if things remained the same or improved, we would be discharged from their services. I was very pleased to hear the doctor come into the exam room and say that everything looks the same, that they will attribute the problems to her prematurity (which apparently this isn't totally unheard of for some preemies), and will be discharging her from services!
If there's 1 thing I like, it's to be able to eliminate and knock a specialists off of the already long list that we see. Especially since I know that the odds of adding more as the CF progresses is high.
The ultrasound was an interesting occurrence, and Judith did spend a fair amount of time during the scan crying and screaming in terror. She had herself convinced that we were "just getting an x-ray," even though I explained that she was getting a different kind of picture taken that used a magic wand instead of a big camera to see her insides. To say she was not amused with the scan is an understatement. All things considered, it went well, but both my mom and I were exhausted because it takes a lot out of you trying to keep Judith still so the techs can get the shots they need.
Coming up later in the month, Judith has her next x-ray, and if that still looks good, we may only have to do 1 or 2 more before we can discontinue them (and hopefully won't need them again for a while). I am concerned by the amount of radiation she's been blasted with since mid-July, including the multiple x-rays she had while inpatient, and will be relieved when she can get a break from all of that.
We also have her annual eye exam, which could prove to be an interesting experience since I know they'll dilate her eyes. But Judith is so excited about being able to get new glasses that it's making me more excited to get her some new frames as well. If I knew we could keep her current frames longer and still have a valid warranty, I'd do it, because they're in really good shape and she doesn't seem to have outgrown them. I can guarantee that I'm getting the same brand, because it has been absolutely fantastic not having to worry about her snapping something constantly and going for repairs every few weeks! The most I've had to take her for were some adjustments to the nose pieces, and in the last year I think I can count on 1 hand how many times that has happened.
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!
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!
Sunday, May 25, 2014
Tune Ups and Clean Outs
Sometimes CF patients need additional help to clear up a complication that’s causing big problems, either over time or that pops up suddenly. Sometimes measures are taken to try to clear up the problem at home, but when that doesn’t work, admission to the hospital happens so other interventions can be implemented.
During “tune ups,” CF patients often go into the hospital for up to 2 weeks for IV antibiotics, and an increased inhaled medication plan to get them back to a place where they have better lung functions and health. IV medicines are administered through the patient’s PICC line or port, and sometimes patients can finish their course of antibiotics at home.
During a clean out, the patient often needs stronger medicines than what were tried at home to clear a bowel blockage. An enema like Golytely can be administered through an NG tube, or through the g-tube if the patient has one. If you remember one of my really long posts from August of 2013, Judith went through an inpatient clean out after developing a large blockage.
During “tune ups,” CF patients often go into the hospital for up to 2 weeks for IV antibiotics, and an increased inhaled medication plan to get them back to a place where they have better lung functions and health. IV medicines are administered through the patient’s PICC line or port, and sometimes patients can finish their course of antibiotics at home.
During a clean out, the patient often needs stronger medicines than what were tried at home to clear a bowel blockage. An enema like Golytely can be administered through an NG tube, or through the g-tube if the patient has one. If you remember one of my really long posts from August of 2013, Judith went through an inpatient clean out after developing a large blockage.
Labels:
antibiotics,
CF,
CF Awareness Month,
CF drugs,
GI issues,
hospitalization
Thursday, May 15, 2014
Salt & Nutrition
I’ve heard other CF parents talk about dirty looks and even snarky comments they get from strangers when they see them salting their young CF child’s food or drink. We’ve been on the receiving end of some strange looks ourselves, and from an outside perspective it really can look like the parents are starting their child down the path to hypertension rather early. Trust me, though, we wouldn’t be doing this if it wasn’t necessary.
CF patients shed more salt than people without CF thanks to the malfunctions in the CFTR (which I still don’t completely understand because it’s pretty complicated), and as a result that salt needs to be replaced to keep the system in balance. Dehydration can also occur faster because of this, which is often why CF patients will down beverages like Gatorade or other electrolyte-replacement drinks. Sort of like the dosing with enzymes, how much salt each patient needs to replace will vary, and can even vary by day. For Judith, I tend to give her less salt over the winter because she’s not sweating as much, and will often eat enough salty foods to compensate. Over the summer, I do add extra salt to her food since she’s sweating more, and I want to make sure that she’s getting enough to replace what she’s losing.
Nutrition for CF patients is also important, because good weight gain and a high BMI are directly related to good lung health and pulmonary function. Because of the absorption issues that many CF patients face, extra calories are needed to help the patient gain weight and get to or exceed the “optimum” BMI of 50%. How many calories a CF patient should consume each day is going to vary depending on the individual, but a ballpark figure that I often hear mentioned is about 2,000 calories each day. Again, that number will vary; some people will not need that many calories, while some might need more than that.
Source: http://www.cff.org/treatments/Therapies/#Eating_Right
CF patients shed more salt than people without CF thanks to the malfunctions in the CFTR (which I still don’t completely understand because it’s pretty complicated), and as a result that salt needs to be replaced to keep the system in balance. Dehydration can also occur faster because of this, which is often why CF patients will down beverages like Gatorade or other electrolyte-replacement drinks. Sort of like the dosing with enzymes, how much salt each patient needs to replace will vary, and can even vary by day. For Judith, I tend to give her less salt over the winter because she’s not sweating as much, and will often eat enough salty foods to compensate. Over the summer, I do add extra salt to her food since she’s sweating more, and I want to make sure that she’s getting enough to replace what she’s losing.
Nutrition for CF patients is also important, because good weight gain and a high BMI are directly related to good lung health and pulmonary function. Because of the absorption issues that many CF patients face, extra calories are needed to help the patient gain weight and get to or exceed the “optimum” BMI of 50%. How many calories a CF patient should consume each day is going to vary depending on the individual, but a ballpark figure that I often hear mentioned is about 2,000 calories each day. Again, that number will vary; some people will not need that many calories, while some might need more than that.
Source: http://www.cff.org/treatments/Therapies/#Eating_Right
Sunday, May 11, 2014
Pancreatic Enzymes
When people think about CF, they typically think of the respiratory side of the disease, but that’s only part of the condition. The digestive system is also heavily involved, and the vast majority of patients are pancreatic insufficient, meaning their pancreas doesn’t function properly because of the thick, sticky CF mucus clogging it up. It is believed that over 90% of CF patients are pancreatic insufficient and need enzymes to properly digest and absorb nutrients from food. So far, Judith is one of the very lucky minority that is pancreatic sufficient and does not need to take enzymes, although we did give them briefly early on while we were trying to figure out some GI issues.
As mentioned earlier, pancreatic enzymes help CF patients absorb nutrients, to digest carbs, proteins, and fats, and to help them gain weight. Without enzymes, patients who are pancreatic insufficient will suffer from malabsorption and will not be able to gain weight (as a side note, some patients who are pancreatic sufficient, like Judith, may still have problems with weight gain because of the disease, so weight gain issues aren’t necessarily isolated to those who are pancreatic insufficient).
Enzymes are taken with meals, and while there are some exceptions of foods that do not require enzymes, most do require them. Dosing depends on the patient, and the CF team will help determine the proper amount, but a lot of parents and patients also get really good at adjusting the dosing depending on what was consumed.
For more information on pancreatic enzymes, you can read the informational pamphlet from the Cystic Fibrosis Foundation: http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/EnzymeReplacement/Nutrition-Pancreatic-Enzyme-Replacement.pdf
Source: http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/EnzymeReplacement/Nutrition-Pancreatic-Enzyme-Replacement.pdf
As mentioned earlier, pancreatic enzymes help CF patients absorb nutrients, to digest carbs, proteins, and fats, and to help them gain weight. Without enzymes, patients who are pancreatic insufficient will suffer from malabsorption and will not be able to gain weight (as a side note, some patients who are pancreatic sufficient, like Judith, may still have problems with weight gain because of the disease, so weight gain issues aren’t necessarily isolated to those who are pancreatic insufficient).
Enzymes are taken with meals, and while there are some exceptions of foods that do not require enzymes, most do require them. Dosing depends on the patient, and the CF team will help determine the proper amount, but a lot of parents and patients also get really good at adjusting the dosing depending on what was consumed.
For more information on pancreatic enzymes, you can read the informational pamphlet from the Cystic Fibrosis Foundation: http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/EnzymeReplacement/Nutrition-Pancreatic-Enzyme-Replacement.pdf
Source: http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/EnzymeReplacement/Nutrition-Pancreatic-Enzyme-Replacement.pdf
Labels:
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Wednesday, January 15, 2014
Clinic Visit
Judith's quarterly clinic visit was yesterday afternoon. It was a typically gloomy day like the majority of clinic days are, but the weather didn't match the mood of clinic since we had a great visit! It was unexpected, and all of us (her team included) were expecting a longer visit going over various options. We dodged a bullet this time, but still have some things to consider down the road.
Everyone is pleased that Judith gained weight this time! She's up to 28 lbs, and is 36" tall. I know she didn't shrink and lose that 1/4" since her well visit, but she didn't want to stand tall with her heels against the wall so they could get a more accurate height. Either way, I don't think she grew that much in a month anyway, so she's still likely hovering around the 36 1/4" mark. For height she's in the 19th percentile, and moved up to the 22nd percentile for weight! Her BMI also increased slightly, and she's now at 15%. So while that's still a far cry from the ideal 50% they would like her to achieve, she's progressing instead of regressing and the team is pleased. I seriously did not expect to see progress like this, and am happy that we don't have to start some of the other interventions we had discussed on the phone!
Our dietician didn't feel comfortable starting an appetite stimulant right now since Judith is gaining and progressing. It's something we want to hold off on until she absolutely has to try it so it doesn't lose effectiveness by the time she would really need to rely on one. I also talked to Dr. G. about a realistic outlook for the possibility of needing a g-tube. With Judith's poor eating habits lately, it's something that's been coming into my thoughts more frequently, and it's something the team is considering. He said that while he does not see a need for one right now since she's making some progress, it's something we need to keep considering for the future. We can't take it completely off of the table, but for now we can put it on a back burner and let the thought simmer until it's absolutely necessary to put one in.
We also discussed the recurring respiratory symptoms Judith's had since she had her sinus infection, and are waiting to see how she's doing once we finish this round of Bactrim in another week. Her MRSA is still sensitive to the Bactrim, so the increase in cough shouldn't be from that unless it suddenly became resistant to it since her last culture in October. If her cough is still present after we're done with this round of antibiotics, we'll reevaluate and start another round as needed.
I'm still at a loss about how to make visits easier for Judith. She's still a miserable beast and wants nothing to do with them when they examine her. At least we didn't have to almost pry her mouth open to get the culture this time since she was busy coughing and screaming, but we did get a really good one since she was coughing. We'll know the results in a week like always, and I'm keeping my fingers crossed that there aren't any pseudomonas present that could be aggravating the cough.
Everyone is pleased that Judith gained weight this time! She's up to 28 lbs, and is 36" tall. I know she didn't shrink and lose that 1/4" since her well visit, but she didn't want to stand tall with her heels against the wall so they could get a more accurate height. Either way, I don't think she grew that much in a month anyway, so she's still likely hovering around the 36 1/4" mark. For height she's in the 19th percentile, and moved up to the 22nd percentile for weight! Her BMI also increased slightly, and she's now at 15%. So while that's still a far cry from the ideal 50% they would like her to achieve, she's progressing instead of regressing and the team is pleased. I seriously did not expect to see progress like this, and am happy that we don't have to start some of the other interventions we had discussed on the phone!
Our dietician didn't feel comfortable starting an appetite stimulant right now since Judith is gaining and progressing. It's something we want to hold off on until she absolutely has to try it so it doesn't lose effectiveness by the time she would really need to rely on one. I also talked to Dr. G. about a realistic outlook for the possibility of needing a g-tube. With Judith's poor eating habits lately, it's something that's been coming into my thoughts more frequently, and it's something the team is considering. He said that while he does not see a need for one right now since she's making some progress, it's something we need to keep considering for the future. We can't take it completely off of the table, but for now we can put it on a back burner and let the thought simmer until it's absolutely necessary to put one in.
We also discussed the recurring respiratory symptoms Judith's had since she had her sinus infection, and are waiting to see how she's doing once we finish this round of Bactrim in another week. Her MRSA is still sensitive to the Bactrim, so the increase in cough shouldn't be from that unless it suddenly became resistant to it since her last culture in October. If her cough is still present after we're done with this round of antibiotics, we'll reevaluate and start another round as needed.
I'm still at a loss about how to make visits easier for Judith. She's still a miserable beast and wants nothing to do with them when they examine her. At least we didn't have to almost pry her mouth open to get the culture this time since she was busy coughing and screaming, but we did get a really good one since she was coughing. We'll know the results in a week like always, and I'm keeping my fingers crossed that there aren't any pseudomonas present that could be aggravating the cough.
Wednesday, September 11, 2013
Cleaned Out
Judith had an appointment at the CF Clinic on Monday to follow up with her latest backup. While she wasn't 100% cleaned out, we did manage to get the bulk of it to move! There was still some poo stuck in the right side of her colon, so we had to continue doing the miralax 3-4 times a day to try to get rid of that. Yesterday it looked like things were at the point her team wanted them to be at, and today we got the ok to go back to a regular diet instead of staying on liquids! Yay!
I was concerned about a cough that was developing, and made a point to mention it during her visit. Her lungs sounded clear, which is good, but Dr. G. decided to do a throat culture to see if there could be anything festering that's causing the cough. I'm hoping it was just from all of the pollen in the air, and not the MRSA flaring up or even a pseudomonas infection. I should know the results next Monday.
Being hospitalized really set back Judith's compliance with appointments. We were on a good path where she was more ok with her doctors examining her, and didn't scream bloody murder, but those days have flown out the window. While she didn't necessarily shriek like she has in the past, she did make herself as stiff as possible, was shoving away Dr. G's hands when he tried to listen to her, covered her mouth with her hand (that was actually rather amusing, because she didn't do it before and discovered that she could do that to try to prevent him from getting the cotton swabs in there), and clamped her jaw shut so she could try to avoid the culture. I know it'll take some work to get her back on the better path again, but for now I feel bad for her because she doesn't quite understand that visits now aren't always going to mean needle sticks and NG tubes.
I was concerned about a cough that was developing, and made a point to mention it during her visit. Her lungs sounded clear, which is good, but Dr. G. decided to do a throat culture to see if there could be anything festering that's causing the cough. I'm hoping it was just from all of the pollen in the air, and not the MRSA flaring up or even a pseudomonas infection. I should know the results next Monday.
Being hospitalized really set back Judith's compliance with appointments. We were on a good path where she was more ok with her doctors examining her, and didn't scream bloody murder, but those days have flown out the window. While she didn't necessarily shriek like she has in the past, she did make herself as stiff as possible, was shoving away Dr. G's hands when he tried to listen to her, covered her mouth with her hand (that was actually rather amusing, because she didn't do it before and discovered that she could do that to try to prevent him from getting the cotton swabs in there), and clamped her jaw shut so she could try to avoid the culture. I know it'll take some work to get her back on the better path again, but for now I feel bad for her because she doesn't quite understand that visits now aren't always going to mean needle sticks and NG tubes.
Sunday, September 8, 2013
Appointments
Last Thursday, Judith and I had a long day at Hershey for some of her follow ups. The main reason we went was for her 6-8 month check for her kidneys to monitor the necrocalcinosis. But because of her recent hospitalization, her CF team wanted to make sure that she wasn't backing up again and ordered another abdominal x-ray. I told them that we were already coming for this appointment, so they were able to send the orders to the lab so we could have the scan done the same day. I knew it was going to lead to a long morning of appointments (and basically a long day period when you count the drive), but it was much easier to do everything at once rather than making multiple trips.
Our morning started with an ultrasound on her kidneys. I wasn't sure how Judith would react, especially since we had to go into the children's hospital to get to the pediatric radiology department, but she was surprisingly chill as we walked in and checked her in. Even during the actual scan she cooperated relatively decently. I was able to keep her still enough this time, and we didn't need an extra person to help restrain her so they could get the shots they needed. While we were in the department, we did the abdominal x-ray, and that was a little more traumatic for her, but at least it was over quickly. We then had about an hour to kill before her appointment with the doctor, and I was glad that she was content with my iPod and watching Sofia the First while we waited.
One of the neat things about PSHMC is it's a teaching hospital, so every now and then med students sit in on and participate in appointments. Thursday was one of those appointments, and Judith was examined by a med student first, and then examined by the actual doctor. I was proud of her that she was really good during the med student's exam and didn't pitch one of her more common fits. Anyway, the renal specialist also checked Judith out, and both the doc and the med student said everything sounded good. The doctor was able to read the ultrasound pictures, and the good news is nothing has changed! She said that the ultrasound pics from a few months ago are practically identical, and they want to see that or improvement. If the necrocalcinosis would've gotten worse, then we would have a problem. We go back in a year for another check, and she said that if things still haven't changed (or if they start to improve), they won't need to see her again and will discharge her from their team. Yay!
That was the high point of the day. The bad news is we're right back at square one with Judith's GI issues. Even though we've been giving her the miralax regularly like Dr. G. wanted us to do, her x-ray showed a moderate amount of buildup, and she was full of poop again. When I called the team to see if they had her results and they told me what they saw, I was worried they would readmit her to do a flush with Go Lightly, but they wanted to try flushing her at home instead. Her team's really good about trying to keep the patients out of the hospital as much as they possibly can, so while I was trying to figure out the logistics of dealing with tons of poo on mostly carpeted surfaces. It's been a relatively interesting weekend so far, and we're seeing results but I'm not totally sure if it's what they're looking for. We need to do a repeat x-ray to see if the miralax did the trick, or if we'll have to resort to something stronger. In other words, if there's still poo clogging things up, are they going to want to continue higher doses of miralax at home, or readmit her for closer monitoring and more Go Lightly?
Our morning started with an ultrasound on her kidneys. I wasn't sure how Judith would react, especially since we had to go into the children's hospital to get to the pediatric radiology department, but she was surprisingly chill as we walked in and checked her in. Even during the actual scan she cooperated relatively decently. I was able to keep her still enough this time, and we didn't need an extra person to help restrain her so they could get the shots they needed. While we were in the department, we did the abdominal x-ray, and that was a little more traumatic for her, but at least it was over quickly. We then had about an hour to kill before her appointment with the doctor, and I was glad that she was content with my iPod and watching Sofia the First while we waited.
One of the neat things about PSHMC is it's a teaching hospital, so every now and then med students sit in on and participate in appointments. Thursday was one of those appointments, and Judith was examined by a med student first, and then examined by the actual doctor. I was proud of her that she was really good during the med student's exam and didn't pitch one of her more common fits. Anyway, the renal specialist also checked Judith out, and both the doc and the med student said everything sounded good. The doctor was able to read the ultrasound pictures, and the good news is nothing has changed! She said that the ultrasound pics from a few months ago are practically identical, and they want to see that or improvement. If the necrocalcinosis would've gotten worse, then we would have a problem. We go back in a year for another check, and she said that if things still haven't changed (or if they start to improve), they won't need to see her again and will discharge her from their team. Yay!
That was the high point of the day. The bad news is we're right back at square one with Judith's GI issues. Even though we've been giving her the miralax regularly like Dr. G. wanted us to do, her x-ray showed a moderate amount of buildup, and she was full of poop again. When I called the team to see if they had her results and they told me what they saw, I was worried they would readmit her to do a flush with Go Lightly, but they wanted to try flushing her at home instead. Her team's really good about trying to keep the patients out of the hospital as much as they possibly can, so while I was trying to figure out the logistics of dealing with tons of poo on mostly carpeted surfaces. It's been a relatively interesting weekend so far, and we're seeing results but I'm not totally sure if it's what they're looking for. We need to do a repeat x-ray to see if the miralax did the trick, or if we'll have to resort to something stronger. In other words, if there's still poo clogging things up, are they going to want to continue higher doses of miralax at home, or readmit her for closer monitoring and more Go Lightly?
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.
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.
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
Exhausted
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.
I'll type up a more detailed entry or 2 over the weekend chronicling our adventure.
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