Wednesday, September 26, 2012

Skeleton Zombie Child

Over the past few days, Morgan and I have spent quite a bit of time browsing through Halloween costumes online. She doesn't quite understand what the day is all about, can't remember what we've done previous years, and keeps asking when we get to go to this mysterious place called Halloween. But what she does know for sure is that we get to dress up, and it's an idea she is very excited about!

"You can be anything you want to be," I told her. But once we began looking, she didn't seem too thrilled with her options.

"Do you want to be a princess or maybe a fairy?"

"No. I don't like to be a princess."

"Hmmm, what about an animal? Like a monkey or a dragon?"

"No, Mama. I wanna be a monster."

"A monster, huh?"

So I pulled up a few cute little monster costumes like this one:

"No, Mama. I wanna be a SCARY monster!"

And that's when she saw it -- her dream costume!

"That's what I want to be, Mom. That scary green guy!"

"That guy? Are you sure?"

"Uh-huh. I love him. And I can be him and I can be scary and say Raaawrr!"

I thought it was a passing phase. Children are fickle, you know. I was sure that by the time I pulled up the costume website again this morning she would have changed her mind. I showed her a few different costumes, all of which she immediately poo-pooed. But when she saw "her" costume pop up in the recently viewed items section, she squealed with delight.

"There he is, Mom! That's the green guy I wanna be!"

Seriously. She's not backing down. She wants THAT costume! While I generally encourage her to make her own decisions and don't want her to feel the need to conform to certain social expectations (especially when it comes to "boy vs girl" toys/clothes/activities, etc.) I do have a few issues with this costume:  

1) It's a little scarier/yuckier than we usually like. I'm all about the spooky and fun side of Halloween, not so much the gory and gross side. 

2) I'm not really sure what the elderly people in my neighborhood will think about my three year old daughter standing on their doorstep in a skeleton/zombie costume. Last year we all dressed up as pirates and saw a few lifted eyebrows over that. "Oooh a pirate," they'd say. "Shouldn't she be dressed like a sweet little princess?" 

3) I don't particularly want to spend the time or money making or buying a costume like this when I can achieve a similar look simply by letting Morgan play in my mother in law's makeup. 

So I'm giving it a few more days, hoping she'll change her mind. I've shown her some other costumes that are a little more typical for a girl her age, but she isn't budging yet. She still wants to be Skeleton Zombie Child. 

Just one more reminder that she is most definitely her father's daughter!   

Sunday, September 16, 2012

"I didn't choose the hospital life, the hospital life chose me"

In the past week or so, a few people have asked me what exactly goes on while I'm here in the hospital. I realized that while I'm very open about having CF, I haven't talked much about what I actually do in the hospital.

Most people probably picture me lying around all day eating Bon Bons and watching TV for two weeks straight, but that just isn't true, friends. It's Netflix, not regular TV. And I prefer sour gummy treats over Bon Bons any day of the week.

For anyone who might be wondering, here's a little bit about what hospital life is like.

Respiratory Therapy:

Usually sometime between 7:30 and 8:30 am, I'm awakened by someone saying, "Jennifer? I'm so and so from Respiratory, here for your morning treatment."

They do a quick check of my oxygen saturation and heart rate, then listen to my lungs with a stethoscope. After that, I get hooked up to my Vest. The Vest is, well, just that - a big vest connected to a machine that inflates with air and pulsates at different speeds. The purpose of The Vest is to shake the mucus in my lungs free, making it easier to cough up.

(CF causes thick, sticky mucus to build up in the body, and that mucus makes a perfect breeding ground for bacteria. If we are unable to clear the mucus out of our lungs, they become a very easy target for infection.)

At the same time the Vest is going I inhale a few different nebulized medications, some of which include Albuterol (to open the airways), Pulmozyme (to break up that nasty mucus), and Hypertonic Saline (which draws fluid into the airways, again - to thin the mucus). I do the same treatments at home, usually twice a day. Here in the hospital, I do them four times a day.

Morgan has loved the "jiggly vest" since she was a baby

Pulmonary Rehab:

Pulmonary Rehab is really just a fancy term we like to use for "exercise". Each day I workout for half an hour to get my blood pumping and my lungs working! I usually walk/jog on the treadmill or ride a stationary bike, and every once in a great, great while I'll do a little weight lifting. (Believe me when I say it's just a little. I have the upper body body strength of a kitten.)

The Rehab technicians (I made that up, I really don't have a clue what their job title is) are really great about helping find the best and most beneficial workout for each individual, and they also give great tips and advice about how to maintain a good workout routine at home.

IV Therapy:

While in the hospital, I'm treated with multiple IV and oral antibiotics. The combination of meds changes from time to time, depending on what strain(s) of bacteria my lungs are currently culturing. I'm hooked up to something called a CADD pump that pumps medication into my body throughout the course of the day. I'm hooked up the the CADD pump 24 hours a day, except when I get disconnected to shower or they stop infusion to give me a different antibiotic (hung on an IV pole).

The CADD pump and medication are both kept in a small bag that is not only conveniently portable, but also doubles as a super hip fashion accessory.... especially when worn fanny-pack style.

I'm not sure if you can tell, but I'm totally "smizing" in this picture.
Tyra would be proud.

My meds are administered through a port -- a medical device implanted under the skin (usually the chest) that provides long-term venous access. I got my port last year and I haven't experienced a single moment of regret. In fact, I'm strangely proud of my port and chances are, if you know me in person, I've probably made you touch it.

This is what my port looks like when it's accessed. The orange stuff
is some sort of hypoallergenic something-something, but I still end up
with a pretty wicked rash from the adhesive.

Random Tests:

PFT's (Pulmonary Function Tests) are done the day I'm admitted, one week into my stay and then again on the day I'm discharged from the hospital. Blood labs are drawn on the day of admittance, then several times throughout my stay to check drug levels.

(Side note: they can never send someone in to draw my blood at a decent time, it's always between the hours of midnight and 6:00 am. I realize a lot of this has to do with the time that my medications are administered, but still, it's annoying. I'm not a fan of being woken up at any hour. When someone is waking me up to stick a needle in my arm, I'm even less pleased.... and oftentimes incredibly confused. I'm fairly certain the gentleman who came in to draw my blood last night/early this morning thought he'd walked in on an exorcism. I woke with a start when he flipped on my lights, then let out a hideous moan/roar as I stretched and rubbed my eyes, angrily mumbling something about my sheets being on fire. If you think I'm dramatic when I'm awake, you should see me when I'm still half asleep.)

Since I'm usually in the hospital for 10-14 days, it makes sense to take advantage of my time here by taking care of any other tests or appointments that may be necessary. My doctors will frequently schedule things like Dexa Scans, glucose tolerance tests, hearing tests (some of the antibiotics are known to cause hearing loss, just one of the many fun side-effects) or visits with the ENT.


One of my very favorite things about hospital stays are the visitors I get! Being in the hospital gives me the perfect opportunity to catch up with friends and family members who live nearby and I don't otherwise have the chance to see very often.

And believe it or not, if you're in the right company and know where to look, you can actually find some pretty fun things to do in the hospital!

I'm not really sure how to
explain this one...
A moment of weakness, maybe?

Morgan and my sweet nephews

Three of my cousins that I grew up with all came to visit.
We were going for a somber/slightly creepy look.
I think we nailed it.

IV pole races!
(This was taken during one of my
stays earlier this year.)

Watching helicopters
Morgan asks to see them each and every time she comes to the hospital

Cruisin' the hallways with my little love

(I think it's important to note that while I do try to make the best of it, the hospital is not all fun and games. I don't want to diminish in any way the struggles that other people are going through here. Usually when I come in, I'm sick enough that the first several days are spent in bed while my body tries to heal. I'm fortunate enough that I usually respond very well to the medications and can get back on my feet by the end of the first week.
Then there are times like this one that I feel pretty darn good even when I'm admitted, but my PFTs have dropped enough that I need to come in for treament before it gets ugly. It's times like these that this place is a little less scary and I get to experience the fun parts of being in the hospital.) 

Monday, September 10, 2012

My little corner of the world

I'll be the first to admit that I am no photographer, but as I was looking through my pictures this afternoon I found these (taken throughout the summer, all very near my home) and wanted to share them.
Aside from living near so many of our friends and family members, having access to exceptional medical care, and the fact that we have absolutely fallen in love with our little town, THIS is why I don't plan on leaving Utah anytime soon.

Morgan's birthday(s)

I'm a month late with this post, but since I did manage to write her birthday newsletter I don't feel too bad about it. Morgan recently turned three... three whole years old! A realization that reduced me to a heap of tears and how did this happen so quickly's for about a week. I know I've said it before, but in my mind three is the official end of baby/toddlerhood. If I'm this much of a wreck now, I can't imagine what I'll be like when she starts school.

We were camping on Morgan's birthday, so we had a little party for her on the mountain - just us and a couple good friends. We got Morgan a bug-catching utility belt, a butterfly net and a wet/dry bug habitat. When I ordered her presents, a friend of mine told me that my child is odd. (My child, odd? Impossible!) Apparently most little girls prefer things like princesses and ponies. What can I say? Kid loves her bugs!

(This was a few days after Morgan bit her tongue, and you can see that she
still had her jaw clenched pretty tightly at this point.)

The next day we had a little family party at our house. Several members of both mine and Adam's families were able to make it, which was great! Morgan still wasn't eating or speaking at this point because her tongue was so sore, but she still seemed to have a good time.
And now every time she plays in her kitchen, she brings me a pink plate with fake cake on it and says, "You have to blow it, Mama. Remember, cuz when I bit my tongue off?"


Wednesday, September 5, 2012

Visualize your cervix as a turtleneck

This post actually has nothing to do with a cervix (neither mine nor that of anyone else), but I appreciate the fact that you clicked on the link despite knowing there was a good chance I'd be discussing that particular part of female anatomy. Or turtlenecks. I mean, ew!

The fact of the matter is that there's no legitimate reason for the title of my post. That's just a little somethin' I was told multiple times while preparing for labor and delivery but as it turns out, NOT visualizing your cervix as a turtleneck is much cooler than carrying that mental image around for the rest of your life. So I suggest you stop thinking about your cervix, PRONTO! For those of you who don't have a cervix... well, what are you even doing here? Don't you know this is the cervix and turtleneck blog?

Oh, and we occasionally talk about bagels. BAGEL!

Okay, now that I've successfully wasted a good minute or two of your life (and no, you can't have it back... sucker!) I'll get around to what I'm really writing this post about. I haven't blogged for quite a while but I want you to know that it's because I had an absolutely incredible, busy, fun-filled and healthy summer! Unfortunately, as too many good things do, my health streak came to an end a few weeks ago.

I came in for clinic and my PFT's were significantly lower than usual, which was a little surprising because I'd been feeling pretty fantastic and I'd really been taking care of myself - being compliant with treatments, working out regularly, etc. Long story short, because my numbers were low yet I was still feeling good, we tried mixing things up a bit with my treatments (which is just a fancy person's way of saying "I haven't been taking Advair correctly for years and was finally shown the proper way to do so") and we added a daily acid suppressant to see if we could take care of some of the tightness I was experiencing.

Two weeks later I was back in clinic, ready to blow some pretty impressive numbers... only to be discouraged by blowing even lower than before! I began mentally preparing myself for an admission at that point, but was still a little baffled that I wasn't feeling worse when my numbers were so much below my baseline.

Come to find out, I have a new friend living in my lungs - stenotrophomonas maltophilia. Or, Harry, as I've begun calling him. Whether or not Harry is to blame for my lungs acting up, we aren't entirely sure yet, but we certainly didn't want to give him a chance to get comfortable in there. So, as expected, I was admitted yesterday. I'll likely be here a full two weeks, unless I make a miraculous recovery and my lung function jumps up significantly within the next week or so.

A friend of mine once told me that blogging/facebook/the whole online world is more of a winter thing, something to do when everyone is bundled up inside and bored out of their minds. I agreed with his theory, but added "yeah, wintertime and during hospital stays."

It's true, the boredom does tend to eat a person up and swallow them whole when they're stuck in a hospital room for weeks at a time. So I'm hoping to kill some of the monotony by doing a little catching up on this blog while I'm cooped up in here. Pehaps over the next few days I'll post some pictures and tell you a little more about my summer.

Well, that or talk about other inappropriate body parts...

Does anyone have any personal experience with Steno?
I've never cultured it before and I'm getting some conflicting information from Dr. Google. 
Any info you have would be appreciated. Thanks!