Ch- ch- ch- Changes

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.

Quarterly Clinic Visit

Judith's big visit was last Tuesday, and it's the one where we do all of our annual labs: blood draws, chest x-ray, etc., along with the typical quarterly stuff like cultures. I was pleased at how well she handled the visit, particularly since she had a busy day at school in the morning! A quick nap in the car while we were traveling to clinic probably helped her mood, as did a good lunch at the "local" deli chain that we love.

I was glad to see that Judith finally gained some weight; she gained about a pound and a half, which is good because she didn't gain between January and the end of April. She's still nowhere close to where they want her to be since her BMI is around 19%, but it's a start. Part of the reason that this makes me nervous, despite her gains this quarter, is that when she gets sick again, she's not going to have a lot of reserves to fall back on. There are other factors at play besides the CF that I'm sure aren't helping the situation: her ADHD, and her inheriting John's freakishly high metabolism (which I would love to be able to bottle, because I'd make a really, really nice profit selling it!).

She gained a few fractions of an inch in height, and is up to about 40.8". So no huge growth spurt... yet!

I'm waiting for her final culture results to come back, and they should be in by tomorrow. We're going to do a stool study again, because her patterns are really whacked out even with the miralax, so we want to make sure her pancreas is still functioning properly or see if she needs to start taking some enzymes.

We are starting her on some nebulized meds, which I am actually very pleased to start. We decided to start with pulmozyme first, partly because hypertonic saline is super irritating (which I knew for a long time), but also because she's not used to nebulizing meds on a daily basis, so this will be an adjustment. Her albuterol is taken via inhaler and spacer, and we only used our neb once for a 28 day cycle of TOBI when she was about 16 months old. Pulmozyme is done once a day, and from what I understand it's a quicker neb, so it's a perfect way to get her started on the nebulizing routine. Since pulmozyme is a mucolytic, it will help thin and break down the super thick mucus in her lungs, and help her cough it up easier. By starting this, and starting it now, we're hoping that this will help cut down on the number of exacerbations she has this coming cold and flu season, and I'm hoping that this will help clear things out enough that, combined with the albuterol to open the airways, we can avoid steroids... or at least oral steroids!

And this brings me to the next finding from our annual visit: Judith's x-ray results. Up until now, every report has indicated that things looked perfectly normal; no signs of damage or mucus buildups. While this isn't totally unexpected, and I was already figuring something was going to start appearing after the number of exacerbations this past winter, Judith is now showing signs of possible damage, and is showing an increase in mucus that's building up and blocking the airways. The mucus buildup makes sense, because she's had a bit of a cough that appears a few times a day, and has been around for at least a month. We're still trying to figure out if some of it could be allergy related. Anyway, it's a bummer that we're now seeing signs of damage, and I was hoping we could go longer without that reality setting in. At the same time, I realize we're extremely lucky that we've gone this long without any signs of damage. So now that it's here, our goal for Judith has to be tweaked a bit; instead of working to maintain no damage, we're now trying to keep it from progressing if at all possible, because the less damage she has once the corrector drugs are available, the better.

So overall, results from the visit really aren't that bad! We have some routine changes to make, once CVS gets the pulmozyme to us, and our days are going to get slightly crazier, but we'll adjust quickly.

Quarterly Clinic Visit

In true spring fashion, Judith had (more like has, because she's still not over it) a nasty cold for this clinic visit. Naturally, I was sick as well, although I was way over the hump and not contagious at that point, even though my voice still sounds horrible. In some respects, I hate taking her to clinic when she's sick with a respiratory bug, because that only means the potential for extra germs to end up on surfaces, but at the same time it works out well because they can hear what she sounds like in person, and tailor her treatment plan accordingly.

If you've been keeping track, this is respiratory infection #4 for her over the last 6 or so months. This is also exacerbation #3, with the 3rd round of steroids. And we learned something new: steroids make my child go absolutely bat crap crazy. The behaviors that accompany her ADHD are exacerbated by the steroids, and she literally becomes a wild woman. I told Dr. G. that we absolutely will NOT use that particular steroid again unless it's a dire situation or the absolute last thing available. He did say that there are some other brands we could try and see how she reacts, but it could be the steroids in general that cause this. I have to say that her behavior this time was especially difficult, because I was trying to fight off bronchitis at the same time, and John's schedule was also insane so most nights of the week I had to fly solo. It was the perfect storm of events, and it was especially trying. Nevertheless, her behavior was that out of control within 15-30 minutes of taking her steroid dose that I don't think it would have been any less exasperating had I been feeling well.

Judith got to try something new at clinic this time! Our clinic has patients start blowing PFTs at age 5, and starts practicing around age 4.5. Judith's not quite 4.5, but when the nurses asked about her age, I pushed a bit and requested starting practice now, because if we can get her started and into the routine earlier, she may not be as nervous or scared about the process and will likely be more willing to cooperate. So the RT came in with a party blower, and we practiced with that for a few minutes! I'm going to be making a trip to the dollar store to get a pack so we can practice at home, and at her next visit she'll get to try it out with the machine.

Judith grew again, and is now 40.25" tall! I knew she was growing again, because all of her 3T pants, while still a perfect fit in the waist, are too short and make her look like she's wading through shallow water. The size 4T/4 pants I have are still slightly long, but are definitely fitting better than the older stuff. Weight gain was not impressive at all, because she barely gained anything since her last appointment. On Monday, she weighed in at 39 lbs 9 oz. So that's an increase of just a few ounces. We're waiting it out to see if she can gain more weight by her next visit, particularly since she's been sick and had back to back infections.

Everything else seemed ok. There is some mucus in her lungs, but she has been showing signs of clearing it out via treatments, and Dr. G. didn't say that he heard anything extra concerning. We're waiting for the results from her cultures, and are hoping that nothing new cropped up that could be causing her wet cough (in other words, we're hoping that it's just the respiratory virus and not something like pseudomonas).

Appointment Week

We didn't have appointments every day this week, but we did have 2 scheduled, and on top of everything else right now, it led to kind of a chaotic week.

The big appointment was the quarterly clinic visit, which overall went really well.  Judith did lose another few ounces, and is down over half a pound at this point, so while they're concerned, it's not at an immediate action point.  She was 31 lbs 7 oz, and her new BMI is 17%.  Since she's been sick, that could be contributing to her loss of appetite, and we're waiting to see if she can regain the lost weight once she's feeling better.  Because her cough is starting to come back, and because she's still pretty congested, she's on another round of antibiotics to see if we can fight off whatever else might be brewing.  We're trying something different, and avoiding the bactrim for now, so she's taking azithromycin for 10 days.

We're going to have to go for a sleep study at some point, because Judith's snoring at night is getting worse.  Granted part of it is due to the congestion, but even when she's not congested, she'll snore.  Dr. G. wants to rule out obstructive sleep apnea, which is apparently very common in young kids, and often gets worse/peaks around Judith's age.  Depending on what the results of the study are, she might need to have her tonsils and adenoids removed.


The other appointment was this morning, and that was a repeat hearing test ordered by her PCP.  Judith didn't quite understand what to do with the test they run in the office, and she wasn't fully cooperating, so they wanted to double check and make sure she's hearing the tones she should be hearing.  Part of the concern also stems from all of the antibiotics she was on while in the NICU to fight off the various infections, because some of them are known to cause hearing loss in preemies and term newborns.  She passed her previous tests, but we wanted to make sure that we didn't miss anything or something started to manifest after her previous test before she turned 1.

She was actually really cooperative today, and the audiologist said that things looked pretty good!  The activities they did with her to get her to respond to the sounds she was hearing were much better than the typical "raise your hand when you hear the sound in your ear" that her pediatrician used (or in other words, how many of us did it during our hearing tests in school).  I was pleasantly surprised at how long she was able to focus!  I'm waiting for a call from her PCP at some point to go over the results more extensively, but we know she's hearing the majority of stuff, and when she ignores us it's more of a selective deal.

Quarterly Clinic Visit

Tuesday was a full day of appointments for us, the big one being our quarterly clinic visit.

One of the bigger changes that happened immediately was the method they're now using to get us into the exam rooms.  Earlier this year, the new, tighter infection control guidelines were accepted, which means our clinic had some changes to make.  We knew it was coming, but also knew it would take some work for them to implement it.  So instead of going to the main waiting room that we've gone to for the last 3.5 years, now we wait at the front of the office (with Judith masked, of course!) and one of the nurses comes out to get us as soon as possible, taking us directly to the exam room, where all of the vitals are done.

I really do prefer this method, and am glad our clinic is now doing it.  I've always been nervous in the waiting areas, because you don't always know who the CF patients are, and after talking to some other moms who go to our clinic I know there have been cases of parents who don't comply with the infection control guidelines and make their child mask up when they're in the main areas.  I am pretty anal about keeping Judith away from other kids in general when we're at clinic, because you obviously never know who has what and who could be a potential danger to her (and her to them), and just the thought of another parent not being fully compliant with the guidelines and potentially passing a bug to my kid kind of freaks me out.  In any case, with the new method of getting us into the rooms, this should hopefully eliminate more of the risk.

Going into the appointment, one of our biggest concerns was weight gain.  Our hospital recently set up one of the patient record access systems online, and our clinic participates in it, so having Judith's records at my fingertips and being able to look stuff up when I need to is really nice.  I knew when she was weighed at her nephrology visit at the beginning of September, she actually lost weight since her clinic visit in July, and didn't really gain anything since about April.  Her BMI also dropped, which had me even more concerned.  I had no idea what our team was going to suggest, but it turns out all of the worry was for nothing because Judith managed to gain about 3 lbs. in almost 2 months!  We also know the jump isn't due to a backlog in her intestines since her last x-ray a couple weeks ago was normal, so this gain is legitimate!

Judith's growth spurt wasn't just in weight, but also in length.  Since September, she grew about 1.75", and is now approximately 39" tall.  I thought some of her pants looked like they were already getting short!  She's weighing in at about 32 lbs. and a couple oz., and her BMI is somewhere in the 30th-32nd percentile.  So while her BMI still isn't at the optimal percentile (50th), she's now back on track for her normal and it's not in a zone of concern.

Since we've been working on potty training, I haven't had many opportunities to collect a sample to check the fecal elastice and get her numbers, plus they preferred to have it at their lab instead of us taking it to somewhere local and having other hospitals mess around with reporting results.  I was totally ok with that, because every other time we've done this in the past one of the local hospitals, which is also one of the few labs that will accept specimens, always screws around and never bothers to report results properly when the orders clearly state that they need to be sent to PSHMC.  Anyway, there's also the distance issue, since the sample would have to be frozen.  She's not showing signs of pancreatic insufficiency, so it wasn't an urgent thing to have done, but it's been over 2 years since we ran the last test and they want to see where her numbers are right now in case she may be headed in that direction.  We were able to get a sample on Tuesday, and her results should be back in 2 weeks or so.

As always, culture results will be pending for about a week.  I'm fully expecting the MRSA to still be present, but will be pleasantly surprised if it changes to MSSA, which is what we want it to do.

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!

The Cystic Fibrosis Care Team

I frequently post about Judith’s clinic visits, or calling clinic to discuss a problem or to get answers that I have for questions that pop up in between scheduled appointments.  Having a specialized care team that knows the ins and outs of CF is crucial to getting the best care possible for a CF patient.  We’re very lucky to live halfway between 2 great CF clinics and have a choice about where Judith gets her care based on her needs at the time.

There are many players in the CF care team: pulmonologists; gastroenterologists; ear, nose, throat specialists; dieticians; respiratory therapists; nurses; and social workers to name a few.  Not all CF patients see all of these specialist, some do see all of them, and some have other specialists that they need to see as well (like transplant specialists if they are a candidate).  Judith’s current CF team, for example, consists of her pulmonologist, dietician, CF nurses, her social worker, and the respiratory therapists when we need to see them.

Since CF is a rare and tricky disease, getting established with a team at a CFF accredited care center is key.  There are over 110 centers in the CFF network, and not only do they provide care for patients, they also help with the research and studies!



(Source: http://www.cff.org/LivingWithCF/CareCenterNetwork/)

CF Clinic

Yesterday was Judith's quarterly visit to the CF clinic.  Earlier in the month, I posted about how frustrated we are with Judith's eating habits, and we knew that this appointment could end up being longer because we needed to talk with the dietician and Dr. G. about what we could do and try to get Judith to eat more than 3 bites at a time.

John was able to go with us this time, and Judith was thrilled to have him with her all day for a change!  There was the added bonus of having his iPad to help distract her.

 

Don't be fooled by this photo, though, because the vast majority of the visit looked more like this:

At least she didn't disappoint and reacted exactly the way we figured she'd react since she does the same exact thing at every appointment.  And yes, she's grabbing the canopy of the stroller to pull it down as far as she could so she could "hide" from everyone.  She never did that before, and frankly I thought it was kind of hilarious because she's still in the mindset that if she can't see anyone else, we can't see her, either, even though we clearly can.

Anyway, normally Judith cooperates really well for the full vitals and with following the contact precautions that we need to take, but she was only cooperative for about half of the vitals, and was absolutely angry at the world because we dared make her wear a mask as soon as we got into the office.  Trying to get a weight and measure her height was interesting.  I realized that she's been getting taller, and thought she might have been in a bit of a growth spurt because I noticed her pants are getting a little short (especially 24 month sizes).  She's 37 1/3" tall, so no wonder her pants weren't fitting as well in length anymore!  She did only gain a little more than a pound since her last visit, and weighed in at 29 lbs 5 oz.  She's been averaging about 2 lbs every 3 months, but this time the gains weren't as good.  Even so, she's still gaining and her team is happy with that.  I'm figuring that by our next appointment she'll be 30 lbs or more, but at the same time I'm glad that I didn't buy 3T shorts for her for this summer because they would still be way too big in the waist.

After the height and weight check, Judith planted herself in her stroller and refused to move out of it until the appointment was over and we got out to the car.  So the nurse took her vitals in there, and this was the one part that she didn't fuss through:

The pulse ox still fascinates her

Holding her arm nice and still, just like the toys in Doc McStuffin's clinic do!

One thing I asked Dr. G. about was trying to rule out something else that could be underlying and causing Judith to not want to eat.  We went over a whole host of things, from trying to figure out if her reflux was back or if she was developing another bowel blockage, etc.  We talked about her poops to make sure she wasn't starting to go pancreatic insufficient (we doubt she is), and he asked if she had any problems chewing or with textures.  He did his regular exam, and everything checked out: lungs are clear, her ears are clear, and her belly was really soft.  We are starting her on some Zyrtec for allergies, though, because she's been sneezing up a storm the last few weeks (as have I), and we're going to see if that helps make a difference, then do some allergy testing when we do her annual labs in the fall.  So despite a DEFCON 3 meltdown, she had a really, really good appointment!

Our dietician went over some additional strategies with us to try, and she suggested trying the things outlined in one of the packets she sent us a few weeks ago.  None of the team members felt that feeding therapy was necessary at this point, and they don't want to try an appetite stimulant either because they don't feel it's necessary.

The only thing I was a bit disappointed about was our dietician saying that we might have a hard time getting the new vitamins approved by our insurance.  Judith's been taking Aquadeks, but within the last year or so they changed the formulation and now it smells absolutely horrible.  Judith had tasted the new formulation, and decided right away that it was not going to be taken.  I can't say that I blame her, because even the team thought the smell was horrendous when I brought the one bottle in for them to check just to make sure it wasn't spoiled!  Anyway, our dietician sent us a sample bottle of the new vitamin that was recently released, but a lot of insurances are still working out the payment details and whatnot, so it may not be approved by them for a while.  I don't want to have to pay out of pocket for the vitamins when we have others that are covered by our insurance, but for the time being I'm seriously considering it because Judith will actually take these.

Since she had a really good appointment (minus the meltdown), we stopped at Chocolate World so she could "see the cows" on the ride.  We had to get her Hersheypark season pass picture taken anyway, and since we were in the area it worked out really well.

Culture Results

No changes from the normal!  It's both good and bad, because the MRSA is still present, but she's not growing pseudomonas or anything else.  We also finished the antibiotics, and Judith's finally closer to her baseline.  She's coughing here and there on her vest, which is good, and it's nothing that's really concerning to any of us so Dr. G. wants to just monitor instead of doing a second round of bactrim.

I was able to get some pictures at clinic this time.  I usually only get to take pictures during vitals since I'm always busy talking with the team in the exam room, but since I was working on a video for our Great Strides team, I made sure I got a few shots.

Judith's getting much better with wearing a mask at clinic.  It usually comes off in the exam room, but that's ok.

She was NOT a happy camper!

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.

Big "Annual" Clinic Visit

We have regular, quarterly appointments for Judith at the CF Clinic, with other appointments in between when something crops up, but today's appointment was the big one with her annual labs.  Usually I can count on this appointment turning into an all day ordeal, but got a pleasant surprise today since we didn't have to wait long for any of her labs.

We started with our appointment with Dr. G.  Judith was being her typical  2 year old self, and kept declaring, "I don't want to say 'hi!' to everyone!", but was pleasantly cooperative for the nurses taking her vitals.

One of these days I'm going to remember to take more pictures to help document her visits since I forgot to take some of her on the scale and whatnot.  Anyway, I was excited to see that she weighed 27 lbs., and am cautiously optimistic that it's not because she's backed up again.  This puts her back up into the 15%, which is way better than the 3% she was at during her last visit.  She's also 35 1/4" tall.

Judith's exam with Dr. G. went well by her standards.  Last visit she figured out that clamping her jaw shut can delay Dr. G. from swabbing her throat for her cultures, so today she had a repeat performance.  He finally got the swab, and Judith was happy once she got a lollipop.  Everything is looking and sounding good, and Dr. G. seemed pleased with where she's at today.

The other half of the big annual appointment is labs.  Depending on the day and time, this part can take a long time with lots of waiting, or it can be a quick event.  Today we got lucky and it was a quick event.  We were the only ones in the waiting areas in the lab and radiology, so Judith didn't have as much of a chance to have a meltdown from a long wait.  She was not happy to be stuck with a needle to have her blood drawn or to have her picture taken, but all of the techs that we had today were really good with her and they got what they needed.  I'm not anticipating any changes in Judith's chest x-ray since her last one was clear, and don't expect anything unusual to turn up in her blood work.  I'm sure that her throat culture's going to grow her usual MRSA, and am hoping that nothing new turns up since her culture last month.

CF Clinic

Today was Judith's quarterly CF clinic visit, and I'm pleased to say that I don't have a lot to report!  Things are still looking and sounding pretty good, and we're fortunate that she is remaining healthy.  She was her typical 2 year old self, loudly declaring "No!  I don't like that!" whenever she could, but once Dr. G. started examining her, she was fine and very cooperative.  Of course we have to wait a week for her throat culture results, but based off how she's doing I'll be surprised if anything has significantly changed since her last visit.

There was 1 thing that we have to really work on, and that her team is a bit concerned about: she actually lost weight since her last appointment 3 months ago.  Today she weighed in at 23 1/2 lbs, which means she's also down 2 lbs from her last appointment with her primary pediatrician.  We definitely have some work to do to try to fatten her up and to keep her from losing even more weight.  On a positive note, she is 34 1/2", so she's still doing well in the height department!

CF Clinic and Illness

First, just a quick update on Judith's quarterly clinic visit.  It'll be short, because she did really well, and things sound good so we don't need to make any major changes right now!  She weighed in at 24 lbs, 10 oz (fully clothed and with a wet diaper, so she was probably closer to 24.5 lbs or a little less), and grew 3/4 of an inch from her nephrology visit, so is now 33.75" long.  We need to increase her miralax dosage because she's still battling some constipation, and we need to keep a close eye on her for the next few days in case she starts showing signs of illness.  Dr. G. didn't want to put her back on antibiotics at this point, despite the morning coughing, out of concern that she might have to stay on them for the rest of the season if we take that approach, and also because we're not sure if the cough is something else or illness-related.  As always, we'll have to wait for her throat culture results, and I'm hoping that the last round of antibiotics knocked the MRSA infection out of her lungs.

Right now I kind of feel like Judith might be a ticking time bomb, waiting for her to show signs of illness.  On Sunday, the Luck of the Irish certainly wasn't with me, because I'm sporting a nasty sore spot on my hand with some bruising and a nasty brush burn on my shin after I tripped over my own pants going up the steps at church (I really hate being so klutzy).  Later that evening, my sinuses started draining, and by Monday morning they were completely stopped up and pounding.  It's been a while since I had a sinus infection, and we were having a pretty good year up until this point.

I've been hand washing and sanitizing like crazy.  So far, so good, because Judith is still healthy (and I hope she stays that way!).  Being a stay at home mom with an active toddler while you're sick is it's own special brand of hell.  I was fortunate, though, that my mom was here to help for a while yesterday, and Judith was pretty good today.  The worst part was seeing her disappointment when I couldn't read to her when she asked (she kept bringing books to me saying, "I read to you!" in her little voice).  I hate losing my voice, but being able to have some vocal rest today has helped a lot, and I hope it, along with the rest of the infection, goes away soon.

So, if you're the praying type, say a little prayer that Judith doesn't catch this, because I'm afraid it might be worse for her than it is for me, and if you're not the praying type, cross your fingers, send good thoughts and vibes, whatever you choose, our way.

Reculture and Ultrasound

We had a pretty busy day of appointments.  Judith had her liver ultrasound, and also had her reculture/check up appointment with Dr. G. immediately after.  We got some good news, a little bit of bad news, and some things that we need to work on.  I apologize in advance because this post will probably be unusually long.

Of all days to have these appointments and to have to go into the hospital, it had to be one of the coldest days of the season and smack in the middle of one of the worst flu seasons in years!  I swear we have some of the worst luck, and just once I would like a nice, decent day for an appointment: not on the hottest/coldest day of the year, no rain, no hurricane causing us to cancel, etc.  Maybe one of these days we'll get lucky!

I was somewhat excited when I got the confirmation call for Judith's radiology appointment last week, and found out we would actually be in the new children's hospital instead of the main building.  What we saw of the interior is really, really awesome!  It was a little confusing finding our way around at first since I'm more accustomed to seeing lots of construction, but the staff was very helpful and we easily got to where we needed to be.

Judith had her liver ultrasound first.  She was side-eyeing a lot of the staff, and as soon as I laid her down on the bed for the scan she started crying.  I kept telling her that it wouldn't hurt, and they were going to take pictures of her belly (I even tried to get her to say "cheese"), but she didn't want to hear it.  The tech was great, and assured me that they're used to this happening, so I didn't feel quite as bad.  We did, however, have to restrain her, and I held her arms while another aide/tech came in and held her legs down.  It was a quick scan; I'd say it took maybe 10 minutes, and we had about 10 more minutes in between things while the tech talked to one of the radiology doctors about the pictures (and, in the beginning, while she looked for someone to help restrain Judith so they could do the scan).  She did cooperate for about half of it, and the tech gave her 2 Mickey Mouse Clubhouse stickers once we were done.

After her scan, we headed over to the CF clinic.  We ended up being about a half hour early for our appointment, but it was nice because we were Dr. G.'s first appointment of the day.  Judith was really, really well behaved!  That's the 3rd appointment in a row that she hasn't pitched a fit while being examined, and I think it's a combination of her remembering and being comfortable with them.  She was impressing them with what she was doing (checking out the cabinets under the exam table, and being cautious while backing out so she didn't whack her head), and also with how well she was behaving.  At one point, Dr. G. asked her if he could take a look at her and listen to her lungs, and she kind of batted at him and said, "No."  Hey, at least she was being honest!

Our appointment was a little longer than I expected, but we had a lot of things to go over.  Dr. G. took another culture of her sputum, and we'll find out the results next week.  I was honest with him, and said that I would be floored if it comes back clean, at least with the MRSA.  I explained that getting her to take the bactrum was an absolute nightmare, and he said that we could actually try tablets next time, and I can grind them up and put them in applesauce or something else to mask it and hopefully get the dose into her.  He said it's tricky sometimes because some parents really want the liquids, but I said it didn't matter to me and I'm willing to try any method to get her to take her meds.  He made a note in her chart, so we'll give the tablets a shot next time!  Judith's also going to be getting a prescription nasal spray to help with some of the secretions.  Her lungs sounded clear (which is awesome!), so they think the cough she's been developing may be from drainage, and they want to try drying her up a bit to see if it improves things.

We got some mixed results with her ultrasound.  The good news is her liver looks fine, and the elevated enzymes are more than likely from random viruses, which can cause those elevations.  Dr. G. said that they see this from time to time, and they always want to check the liver just to make sure everything is normal.  Judith's biliruben levels are well within the normal range, so what we thought was jaundice is more likely her normal pigment coming out.  The bad news: she has a small kidney stone, which is not CF related, but most likely a residual preemie complication.  While in the NICU, Judith was on lasiks a few times, which puts her at higher risk for kidney stones.  So Dr. G. is referring us to a renal specialist for a consult, and we'll hopefully get more information at our first appointment.  Her kidney is functioning normally, so that's a plus.  We just get to play the waiting game for the stone to pass, and I feel horrible for Judith that it's going to happen eventually.

Judith will be getting a nutrition overhaul.  She is so picky, and we need to restrategize to get her to eat some higher calorie foods to help get her to the optimum percentile (50th).  This could be interesting, especially with a picky toddler!

The last thing we discovered is that they know what Judith's other mutations are.  You read that right: they detected 2 other mutations in the genetic panel.  We hadn't discussed her genetics in a while, and I never thought to ask, so I was surprised when our nutritionist mentioned the other mutations.  I feel pretty relieved now that we know what I'm carrying, and we can use that information to move forward with her care.  I want to do a little reading on the new mutations, and then I will write a separate post explaining it.

So overall we had a pretty good day and got some great news!  We'll see what the culture results yield, and then go from there.

2013

What better way to start the new year than an impending throat culture?  Sarcasm aside, I know that we're going to be taking Judith in for her reculture sometime very soon.  I called our nurse coordinator today to get a better handle on what's going on with the liver function tests, to see when we need to do the culture, and what we should do about the antibiotics.  We still don't know a lot, but I feel better after this phone call than I did a couple weeks ago when we got her lab results back.

Judith's pulmonologist has a packed schedule, but they're going to try to squeeze her in.  I said that we were having a hell of a time trying to get the bactrum into her (so far she's probably taken a few full doses, but most of it is spit out, much to my chagrin), and that we've exhausted practically every technique we could think of: trying to mask it in pediasure/other beverages, masking in various types of food, pinching her nose, wrapping her in a towel to help hold her arms down (also serves as a great medicine catcher) - you name it, we've tried it.  Each time she's prescribed bactrum it gets progressively worse.  Whether it's the artificial grape flavor, the actual medicine (which smells like crap, so I can only imagine how it tastes), or a combination of the 2 remains to be determined, but at this point it doesn't make much of a difference because she flat out refuses to swallow it.  I'm sure Judith's not the first toddler to completely battle a medication, and I do think we've been relatively lucky with her compliance with meds and treatments, so I guess a battle with some things is inevitable.  Anyway, Dr. G. said that he would prefer to see her and listen to her lungs when we do the reculture to check things out.  I know this is going to make it trickier to schedule, since a reculture would be a quick nurse visit, but they'll work it out and will call us with a time.

One of the bigger reliefs for me is they want to do the liver ultrasound at the same time.  They know that we took Judith to the urgent care facility because she was looking jaundiced, and even though we said she doesn't look nearly as bad as she did a few Saturdays ago, they would rather do it now instead of waiting, just in case.  So instead of waiting a few months for her next regular visit to get some answers, we'll hopefully be able to get a better idea of what her body's doing in a few weeks.

Culture and Lab Results Are In

We have mixed news this time, and probably won't have answers on a couple things for a bit.  First, the good: Judith's blood work mostly looks good, and her chest x-ray is normal (something Dr. G. is very pleased with).  Somehow the lab forgot to check her vitamin D levels, so we'll have to get that checked the next time she has blood work done.  It's not a crucial thing and can wait.

The bad news: her liver levels are elevated for the 2nd time in a row, so Dr. G. wants her to have an abdominal ultrasound to check things out and to get a baseline.  We'll run that test sometime before her next appointment, so we'll have to wait to find out more information and to get an idea of what's going on in there.

Throat cultures weren't as good this time.  She had 2 clean cultures since her first pseudomonas infection last April.  I was really hoping for a 3rd clean culture, but luck was not on our side.  Her lungs are culturing MRSA, so we're going to do a round of bactrum and see if it can eradicate it.  The nurse coordinator explained that, just like with the pseudos, they want to try to catch and treat a MRSA infection quickly so it doesn't become a more serious issue and so they can reduce the amount of potential damage it can do to the lungs.  I did give her a head's up about Judith's 2 MRSA infections in the abscesses over the summer, just in case they wanted to move to a stronger antibiotic.  Since the cultures for the lungs are slightly different than the skin cultures, she said they can still try the bactrum and take it from there.  One good point we discovered from the culture is she is still pseudo-free, so at least we don't have to worry about that on top of the MRSA.

I hate that when it seems like she's doing well, something else crops up to slap us back into reality.  It's frustrating.

CF Clinic

Hurricane Sandy delayed our clinic visit, but we finally got to go for our fall visit today.

Exploring things in the waiting room

 Her well baby visit last Friday went really well, and I was cautiously optimistic that we might be starting to turn over a new leaf and wouldn't melt down every time the doctor came into the room.  When the nurses called her into the triage area to check her vitals, things got off to a good start:

Waiting with Daddy

Watching the nurses get the equipment ready

Fascinated by the light on the pulse ox monitor

Checking her BP

Bubble distraction!

Judith saw Dr. G. walking in the hallway twice while they were taking her vitals, and she didn't cry!  That hasn't happened in a long time, and I felt more confident that the visit would go well.

Weighing her was not easy since she was protesting the scale.  They used the infant scale so they could get the most accurate weight since she was still in the 3% for weight at her last visit.  Today she was 22 lbs 12 oz (naked), so not too far off from the pediatrician's scale.  They measured her at 32.5", but we're not sure how accurate that is since we didn't know if John had her head in the right spot.  She calmed down once she was allowed to get off the scale.

Our visit with the team today was a little faster than normal, but I also didn't have a lot of concerns or questions.  Judith cooperated so well during Dr. G's exam, and really impressed the team, both with her behavior and her new language skills.  Her lungs sounded ok (normally Dr. G. says they're good if they're totally clear), and I may be reading too much into things, but they want to wait and see what her chest x-ray results are.  I'm hoping for clear lungs, and also for a clean throat culture.

In addition to the x-rays, we had to do her annual blood draws.  I knew that was going to be rough, and there isn't anything we can really do about it.  Her nurse put some of the numbing cream on her arms before we went to the lab, and while that helped a bit she flipped out when they had to dig for the vein with the needle.  I hate it when they do that to me, so I don't blame her for crying harder.  She unfortunately had to have 2 needle sticks, one in each arm, because the first vein blew halfway through the draw.  I feel bad for her, and I'm glad we don't have to do this often.  We should have results for some of the tests early next week, and the rest should come back in the next week or 2.

CF Clinic

Judith had her quarterly clinic visit today.  Much like most of our visits, there are positives and negatives - as of right now, we're not looking at anything major (pending her throat culture results).

I am so grateful that my mom is able to go with me to these visits when John is unable to!  It helps a lot having an extra set of hands, especially now that Judith is into everything.  We had some fun in the waiting room after her vitals were checked and while we were waiting for an exam room to become available:

Saying "baby" to herself in the mirror.

"Mommy, do you see the baby in this mirror?"

Silly faces

Practicing opening wide for her throat culture

Once we got into the exam room, she started to melt down (something I was hoping we could avoid since she did so well at her 18 month well baby visit) when we put her on the scale to weigh her:

Judith currently weighs 21 lbs.  That means she only gained 4 oz in almost 2 months.  Realistically she could've gained a few more ounces since the pediatrician doesn't use the digital scale for her anymore, but even so the difference wouldn't be that dramatic.

While we were waiting for the nutritionist and Dr. G., Judith entertained herself with the bead toy in the exam room:

She was very serious about her visit today

"Grandma, do you see what I'm doing?!"

The nutritionist came in a few minutes before Dr. G., and I got a chance to talk to her about how things were going since I made the phone call to her a few weeks ago.  I described what her typical meals look like, and we talked about how Judith isn't really interested in eating as much as she is drinking her Pediasure (all of us were concerned about this since her weight gain was so minimal as a result).  Once Dr. G. arrived, we went over all of this info again, and we think that part of the problem is because she's still so backed up with her poop.  We're going to start giving her the miralax every day to see if that can clean out her system.  I also mentioned how there's a sheen to her poops, and the team is concerned about that on top of everything else - it could be a sign that maybe she is becoming pancreatic insufficient, so we're going to test her poop again.  With her track record, it very well may be a normal test, but Dr. G. wants to stay on top of this so we can treat it early if something is developing (which I am pleased about - I'd much rather go this route as well!).

We talked about the increase in coughing that Judith is doing.  Right now we're keeping an eye on it and waiting to see what her cultures come back with.  Dr. G. said that the cough could mean the pseudomonas are growing again, but it could also be triggered by something else, something like an allergy.  We should have her culture results by next week (possibly Friday if things grow quickly), and we'll do some allergy testing when we do her annual blood work.

Probably one of the biggest pieces of news is Judith finally weighs enough that we can order her Vest!  Dr. G. is giving the script to the nurse coordinator so she can get the ball rolling and the order placed!  I am so excited that this is finally able to happen!  It has been a massive struggle trying to do manual CPT on Judith for a long time (lately it's been a nightmare - she tries to get away from me, kick/hit me, etc), and frankly my wrists are starting to bug me because of the repetitive motion involved.  I know that introducing her to her Vest is going to be a new battle, but I'm staying optimistic, hoping that she will adapt to it quickly like she did to the nebulizer.

Reculture and Miscellaneous Musings

Our days have been fairly busy lately, especially now that Judith is walking all over the place and getting into everything she possibly can.  She seriously wears me out big time - at least I'm getting a decent amount of exercise chasing after her!

Thursday and Friday of last week we enjoyed some warmer weather.  Friday's temperatures were high enough that I was able to break out one of the adorable smocked sun suits I purchased for Judith a couple months ago!  I decided to go with the Preppy Alligator pattern from Shrimp & Grits Kids:

 Removing all of her animals from the chair

Check out that ruffle butt!

Adorable detailing, and a bonus side-eye (she's getting rather good at that...)

On Saturday I packed Judith and the dogs into the car and drove to my parents' for a little visit!  The dogs were excited to go to their house again, but were apprehensive at first - they weren't sure about what was going on with my dad, and they finally warmed up and realized things are ok after an hour or 2.  I went with my mom to the salon to get haircuts, and Judith had a great time trying to de-shelve the brightly colored bottles of products and playing in the hair that was cut off of my mom's head and my head.

Sunday afternoon we caught a break.  John played in our local AGO chapter's member's recital, and got a ton of compliments on one of his arrangements!  Thanks to these people complimenting him, he got an extra dose of motivation to start contacting publishers to get some of his stuff out there (I've been encouraging him to do this for years, but I guess this was the push he needed to really take it seriously).  Since Judith decided naps are for quitters (that made for an interesting worship service), I stayed home with her so she could sleep and I could relax.

We'll skip over Monday since it was a boring day with minimal action.  Fast forward to today: I took Judith to Hershey for her reculture of her throat/sputum.  While we still have 3 more doses of TOBI to give her, I'm keeping my fingers crossed that the meds worked and the pseudomonas are gone.  We probably won't get the results until Monday.

I was alone with her for this appointment, and thankfully she didn't have an epic meltdown - she was by no means happy about having her throat swabbed, and melted down a little bit, but it didn't last as long as normal.  She even reached out to the nurse for her to hold her!  Of course after the nurse swabbed her, Judith gave her best "boo boo" face and cried, but when I reminded her that she wouldn't see Dr. Graff at this appointment she calmed down.

Speech therapy went well today!  Judith babbled more for her therapist, and we got a charge out of her carrying around a canister lid and laughing hysterically at Lady, who was closely trailing her - Lady naturally saw a disc shaped object and assumed it was a frisbee for her, and wanted to play with it but Judith wasn't giving it up!  I knew she was getting tired on top of it, because she was extra silly, but I was also impressed at how focused she was when playing with Lady!  Naturally Lady had a blast chasing after Judith, even though she didn't understand why Judith wouldn't just throw the lid for her.

Spring Clinic Visit

This particular visit was intended more as a follow-up to the possible pancreatic insufficiency we thought Judith may have had, but as we all know she's sufficient, so this visit turned into more of a standard visit.

Things are still looking good!  Dr. Graff said her lungs still sound clear, and he's working with the insurance company to get her approved for Synagis one last time this season.  We're still a little bit concerned about her weight gain: she's up to 19 lbs 5 oz, and still around the 3% mark on the charts.  At least she's back on the charts this visit!  The nutritionist and I are going to work on charting what she's eating to see if we can find other ways to boost the calorie content of her food.  Part of the problem is her ever increasing mobility, and now that she's walking it's only going to make things worse.  And both the nutritionist and Dr. Graff reminded me that when we adjust Judith's age, she's really not doing bad with her weight.

One of our concerns is her poop is looking really mucus-y at times.  I was just assuming that she's swallowing a lot of mucus right now, and instead of puking it out she's pooping it out (it's a wonderful visualization, I know).  Since I'm definitely concerned about her weight, and her team is a bit concerned, they're going to start testing for some other possible conditions that could be in play other than the CF.  Since we had to do her annual blood draw today, they're going to run a test for celiac disease at the same time.  We don't think she has celiac, but they want to start there to rule out the possibility.

We also talked about what we need to do with her if she is still denied the last dose of Synagis (other than the common sense things, which we've been doing all along even with the shots).  We have a list of a few different symptoms to watch out for that could indicate she picked up RSV somewhere along the line.

Hopefully the insurance will accept the team's appeal and will approve her shot, and hopefully we can go and get it by the end of the week.  In the meantime, we'll have to wait until after Easter to get results for most of the tests they're running.