Friday, October 31, 2014

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.

Wednesday, October 22, 2014

65 Hours of Silence for CF Reflections

Last week, I participated in the 65 Hours of Silence for CF event, where people would donate $6.50 (or more!) to a CF organization of their choice, then forgo the use of social media until their 65 hours was up.  Some people argued against going silent, but I fully supported this tactic.  Yes, CF needs a voice, and we have to talk as much as we can because of it being an orphan disease that doesn't have a lot of awareness; however, this is a case where I strongly felt like I've "screamed" enough (and I know people have even gone as far as to hide me on Facebook, at least for a few months out of the year, because of fundraising and whatnot), and I, along with thousands of others, decided that maybe it's time for the quietest voice or silent voice to try and gain some attention.

Like so many people, particularly those in my generation, I rely on social media to communicate with people and just pass the time.  I'm fully aware that I use it a lot, so I knew this could turn out to be a challenge.  I completely avoided Facebook, the online message boards I post on, and even went as far as logging out of Goodreads so I wouldn't be tempted to message some of my friends on there and therefore skirting the entire point of no social media.

I'd be lying if I said this was really easy.  So many times throughout the day, I'll reach for my iPad or my laptop and log onto Facebook to chat with friends or connect with other CF parents/patients and ask questions.  I intentionally didn't boot up my laptop until my 65 hours was up so Facebook wouldn't tempt me when I opened my browser.  During the silence, I often tapped on my "social media" tab on my iPad and was tempted to log onto Facebook or Messenger because it's a habit.  The first day (Wednesday) wasn't too bad, but by Thursday I was starting to get antsy.

Part of what triggered the itch to log back into Facebook was the realization that I didn't have my CF supports a click or tap away.  Thursday morning, during Judith's AM vest treatment, I noticed what I thought was a small leak near the part where the hoses attach to the vest.  I usually don't call the vest company right away unless the problem is really big or really obvious, and I will usually post on our clinic support group page or the big CF page to see if anyone else had a similar issue, and if it's normal or not.  With this leak, I wasn't sure if it was the normal venting that the inCourage does and I was oblivious to it until that time, or if it was a true problem that would require a new vest.

This time of silence made me realize how isolating this disease really can be, especially if you don't have access to the technology to make connecting with others possible.  Because CF patients aren't supposed to be around each other, it's really hard to connect with other parents who know exactly what you're going through.  Connecting on the internet is so fast and easy, and I'm spoiled that Judith is so young and I've had the ability to connect this way for her whole life.  I'm grateful that the technology is what it is, because as Judith gets older, she'll be able to safely connect with other CF patients her age, and talk about the disease along with other typical stuff.

I have to admit, though, that unplugging was nice, and taking that break was good for me.  I always knew that Facebook especially is a big distraction, so eliminating that helped me focus on other things when I had down time.  Most evenings I like to read or play games to relax, and right now reading is my activity of choice.  I've been working my way through George R.R. Martin's A Song of Ice & Fire (the Game of Thrones books) series, and I was able to make some great progress in A Storm of Swords.

I'm not sure if this event will be an annual thing or not, but I hope that it will be, and more people will participate next year.  I know I'll certainly sign up to do it again!

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.

Tuesday, October 7, 2014

Food for Thought

I have to say that I’m fortunate to have a good support network, including some fantastic friends who don’t bat an eyelash when I do certain things with Judith, or have to cancel at the last minute because something happens with her and we have to add an extra treatment, boost her miralax for the beginnings of a clean out, etc.  There is, however, something that has been bothering me since the weekend, and I think it’s the timing because there’s a lot of stress in my life right now, which in turn can affect my mood.  I know it’s little things that shouldn’t bother me, and even though we’re still relatively early in our CF journey (although almost 4 years feels like forever) you’d think I’d be used to the weird stares, comments, and judgments from strangers.  I never quite understood the judgy, sanctimommy/sanctidaddy mentality that can plague some parents these days, but really, this is something that has got to stop.  You just don’t know what the person you’re trying to chat up is dealing with, and there’s probably a darn good reason for them doing something the way they are.

One of the things I really strive to do is advocate and bring awareness to CF.  It’s a fact that an orphan disease is not going to be encountered as frequently as something that is much more common, and people won’t know a lot about it unless they have experience with it.  That’s why I feel like I need to address some things, to get it out in the open.  Partially for my benefit, because I feel like I’m going to explode if I don’t, but also to try and make a difference.  If it causes someone to stop and think before being really openly judgmental, then I know it will have made a small difference.

Please don’t stare at my child like a freak if she’s melting down before or during a procedure.  There could be any number of reasons that trigger this reaction.  For her, one of them is due to the fact that she’s been through a ridiculous amount of procedures in her short life, and she’s over it.  Now that she’s at an age where she can understand what’s going to happen before it happens, it can make things trickier.  It’s embarrassing enough when she’s having a meltdown in public, but to have really judgmental stares levied on us doesn’t help.

Why yes, we are aware of the obesity epidemic in this country, and are aware of the dietary guidelines pediatricians recommend!  We offer plenty of healthy options, but guess what?  Those dietary guidelines go right out the window with a disease like CF, and you have to pump a ridiculous amount of calories into a small body to get her weight and BMI to a level where it’s going to give her a better chance at better lung health.  It’s not easy when your child needs to eat more calories than many adults.  So you can stop right there with your side eyeing and judging when I offer high calorie things in large portions when a typical kid should receive a smaller portion or not eat that particular food often.  If you think Paula Deen uses a lot of butter, you need to spend a day with a CF family.  I’d be willing to bet large sums of money that the amount of butter Ms. Deen uses in her cooking pales in comparison to the amount of butter CF families consume in any given year.  And no, I’m not setting my kid up for a life of early onset hypertension by salting her food, nor are we neglectful parents for allowing her to have all of that sodium in her diet.  Salt is necessary for her to have so she can replace what she’s losing, and this is even more important in warmer weather.  You worry about what you and your family is eating, and I’ll worry about mine, thank you very much.

I know this one is hard, because of the stigma that often goes with a surgical mask, but please don’t make snide comments like she has the plague when you see her wearing a mask.  Not everyone who “masks up” is sick; there could be any number of reasons why they’re doing it, and it’s likely they’re doing it for their own protection so they don’t catch something from you.  I know, it’s hard to discern who really is sick and who is doing it for their own sake, but I guess the big issue I have is when people make audible comments about it.  No need to be rude.  If you’re unsure, it’s perfectly ok to quietly move away and move your child away (if you have a child with you), just don’t be a jerk about it.

Conversely, if I’m quietly moving my child away from yours after you stand there and loudly declare about how her twin sister was actively puking in the car on your way to the building, and both have been coughing a lot recently, don’t make nasty faces at me or judge me for doing what I am.  Just like you might feel a natural inclination to move away from someone you see wearing a mask, I feel a natural inclination to go into protective mama bear mode and minimize the risk of exposure to whatever illness your child has all while trying to teach my child to move away from and stay distanced from people who are sick for her own protection.  Yes, you are right that kids pick up germs, and will be exposed to them.  I get that.  I try not to keep my child in a bubble even though there are plenty of times when I want to seal her up in one.  What I’m trying to do, though, is minimize the potential for something to set up shop in the extra thick, sticky mucus in her lungs and cause irreversible damage.

Lastly, don’t minimize what we’re going through, and please don’t compare it to another disease.  Every disease or condition has it’s own challenges, and they can’t really be compared.  If we’re opening up and talking to you about something that may scare you, don’t brush us off and tell us it can’t be as bad as what we think it is.  Truth is, it might be that bad or worse.  It could end up not being as bad as we think it is.  We just don’t know, and the unknowns are scary.  Oh, and please don’t dismissively tell us that our child will “grow out of this.”  All that statement does is show your ignorance about the disease, and it manages to piss us off.  Do we expect you to go out and research every last detail?  Heavens, no.  That’s unrealistic.  All we ask is that you don’t make an asinine statement along the lines of “growing out of it,” and if you’re unsure if it’s curable or not, ask.  We’d rather take a few seconds to answer your question and help you understand than dealing with the raised blood pressure that’s going to result from you not checking your filter before speaking.

I know this was an especially long post, but thank you for bearing with me.