Wednesday, April 27, 2011

With less making out in the elevators

Sometimes I feel like living in the hospital is like living on a TV show. This hospitalization has had nearly all the elements of a good medical drama episode:

The drama - emotional ups and downs, gossip at the nurse's station, crazies on the elevator, orders being entered incorrectly (which results in all kinds of fun).

The mystery symptoms - nausea and vomiting, unexplained widespread pain, various body parts going completely numb, crippling pain in my hands.

The diagnosis - allergic reaction to the meds.

The heartache- in the short time that I've been here, two CF patients have tragically passed away; one during a double lung transplant and the other quite unexpectedly.

The little victories - my PFT's are up, I took five flights of stairs twice today (only stopping to rest once each time), and I've gained back most of the weight I lost during the first week of this hospitalization.

The sexual trysts in empty on-call rooms - okay, so this one isn't really happening but I certainly got your attention, didn't I?

It's been an interesting stay, to say the least. If you asked me last week, I'd have told you there had been a terrible mistake; I was supposed to get a room in Acute Internal Medicine, but somehow I wound up in Hell. Between the issues with my PICC lines, the nausea that prevented me from eating for three days and multiple allergic reactions to the medications, I was NOT a happy camper.

Fortunately, the meds are doing their job and even though I felt like last week wasn't very productive, my lungs feel differently. Having surprisingly good PFT's on Monday was exactly what I needed to snap me back into, well, back into being me. However, my own good news is thrown into sharp relief by the deaths of two members of the U of U CF family. I only had a couple brief encounters with one of them, and I never had the pleasure of meeting the other, but their deaths have greatly affected several people that I do know and love.

There has been a noticeable dark cloud hovering over the CF unit. Both the patients and staff are very shaken up over what has happened. I don't think a lot of people understand the bonds that are formed in this type of hospital setting. I'm still fairly new to the scene and I spend a lot less time here than some of the other patients, but when you total it up, 2 of the last 17 months of my life have been spent in this hospital. In that time, I have formed true friendships with some of the nurses, respiratory therapists and members of the CF team. With each stay those friendships run deeper, those bonds become stronger. These people are absolutely heartbroken over the recent losses, and that makes my heart hurt. After learning of the second death since my arrival here, I had a moment of pure anger and frustration. Not for myself, but for the friends and family of these two individuals.

I'll be going home Friday and I can't even tell you how excited I am to sleep in my own bed next to my cute husband. Even though this hospital life is a little bit like an episode of Grey's Anatomy (and we all know I love me some Grey's) I'd MUCH rather be home, spending my evenings like this:


I want to thank everyone for their thoughts,
messages, calls and visits. They really do
help more than you'll ever know.

Monday, April 25, 2011

April 2011 Newsletter: 19-20 months

Dear Morgan, 


You may have noticed that for the first time since I started writing these newsletters, I missed a month. For several reasons, I just never got around to writing March's letter. If I had, however, it would have gone a little something like this:

Dear Morgan,

You have a hideous temper. Your tantrums are absolutely terrifying. There was a two week period of time that we stopped taking you out in public. We were trying to avoid any scenario in which a lawsuit could be filed against us because you'd gotten loose, viciously attacked and seriously injured someone. But things are getting better. The bruise under my eye is no longer visible and Dixie finally dares to leave her hiding place under the couch every few days to use the bathroom.

Love, Mama

P.S. You are the light of my life.


I wasn't sure I would get around to writing a letter this month either because (I know I've used this excuse time and time again, but it holds true every time) things have been a little crazy. In fact, I sit here typing this from a hospital bed because, you guessed it, I'm in the hospital again. I spent the first half of this month telling myself I wasn't getting sick, then pushing myself way too hard trying to prove it. Turns out, I still got sick. So now I'm here working very hard to get better so that I can come back home and be the best mom I can be for you.


It sucks to be away from you. (I've probably told you not to say "suck". My mom always told me not to. But guess what, Mama says "suck". Sometimes things just suck. Sometimes they really suck.) It sucks that so far you've spent two months of your short life without a mama at home. It sucks that your routine goes out the window and your whole world is shaken to the core when I'm here. It sucks that I have to be entirely dependent on others to care for you while I'm in the hospital. It sucks that your birthday party last year and our Easter celebration this year were both ruined because of unexpected hospitalizations. It sucks that one day I'll have to tell you about cystic fibrosis. It sucks that so much of our life revolves around those words. I'm not usually so negative about this, but I want you to always feel like you can be open with me about your feelings and so here I am, being completely open with you. CF SUCKS! And you can feel free to use the word "suck" as much as you like whenever we talk about it. (By the time you're reading this, I believe we will have discussed it a lot. Which sucks.)


Morgan, something I've always seen in you but that again I find myself in complete awe of is your capacity for love. When you're not throwing chairs across the room or biting chunks out of the fur on Dixie's back, you are incredibly caring, affectionate and sweet. One night last month you somehow got the idea in your head that I'd hurt my bum and you were honestly very concerned about it. You spent the entire night following me around, gently rubbing my behind, saying "Owie, booty. Booty, ow." Though I was a bit confused (and flattered, really) that you were so preoccupied with my bum, I couldn't help but think that if people genuinely cared about other people's butts the way you do, the world would be a better place. Then last week I got some news that brought tears to my eyes. You saw me crying from across the room, came running over, climbed onto the bed with me and immediately started wiping away my tears. I was amazed that, without anyone saying a word, you understood that I needed comfort, and I really did begin feeling better with each tear you wiped away. Then I noticed you were eating each of those tears which kind of ruined the moment, but I like to think the sentiment was still the same.

You're talking up a storm, though now that other people have been helping care for you, I'm starting to realize that much of what you say is only understood by a few people: me, Mindy (your babysitter/second mom), other small children (it's like a secret language you guys have) and sometimes your dad. My favorite word you say right now is "wud", which is how you say "love". You'll pull your dad or I close to you in a giant bear hug and say "wud", and it melts my heart every single time. Your newest word is "topto", which is really "helicopter". You've spent the past two weekends looking out the window of my hospital room, watching the toptos transport people to/from the neighboring hospital. Each time you see one, you shout "TOPTO!" then frantically pound on the window as you watch it land. I'm grateful to the toptos for making this stay a bit easier on you (and your dad, who loves the toptos just as much as you do).


If there's one thing about these hospital stays that could be considered good, it's this: being locked up here away from "real life" makes me that much more grateful for the life that we've created at home. Nothing else has the ability to make me appreciate home and our blissfully boring evenings together in quite the same way, and in a strange way I suppose I'm lucky for that.

But mostly it just sucks.

Wud,
Mama

Sunday, April 24, 2011

A few of my favorite (hospital) things

1. Endless games of "Where's Morgan?"
Although there are only so many places one can hide in a hospital room.

  
2. Catching up on all the movies Adam refuses to watch
On the list tonight, Black Swan.

3. This sleepy face
Look at those baby blues. Need I say more?



4. Getting out of my room
For any reason, really, but especially when it involves food or sunshine.



5. Getting to eat in bed
Do I mention this little perk every time I come here? Probably, but Adam won't let me do it at home and right this second there are Butterfinger crumbs in my bed and no one even cares! How cool is that?

6. Watching helicopters
My room has a pretty cool view of the helicopter landing for the neighboring hospital. What I enjoy even more than watching the helicopters themselves is watching both Adam and Morgan make a mad dash for the window every time they hear one approaching.



7. Being with my baby girl 
It doesn't matter what we do, really. Just having her here makes me one happy mama.



8. The view
I know I've said it before, but the views I get from this room are awesome!



Thursday, April 21, 2011

One day I'll breathe like you

I don't have the energy to post much today, but considering the date, April 21st, I wanted to be sure to post this in honor of the late Matt Scales. Please take a few minutes and watch the videos here: this is his legacy.

Tuesday, April 19, 2011

Hospital vacation

Someone (I won't make my husband feel bad by mentioning any names) recently told me that a two week hospital stay sounds like it'd be a two week vacation. "Lying around, sleeping in, watching TV all day."

Now, admittedly, I don't get out very often but from what I recall, vacations don't usually include so many needles. I also don't think I've ever been on a vacation where someone woke me up at two hour intervals to ask about my bowel movements. Other things I don't generally associate with vacation: mandatory workouts, 5:00 am blood draws, crying for an hour over missing my baby, adverse reactions to antibiotics, being so drugged up that I can't function for two days straight (well, there was that one time in Mexico...) (I'm kidding, Mom!).

The point is, the hospital is not my idea of a vacation.

Today I didn't feel very well. I haven't had an appetite since I was admitted and just the thought of food has made me nauseous. Thank the meds for that. I also started the day with a headache that could be attributed to the meds, or possibly the extremely low blood pressure I've been having.

My friend, Holly, came to visit with her adorable boys and I spent a large portion of the day talking to her from under the covers in my bed. At one point we took a (somewhat lengthy) walk to The Point Restaurant at the Huntsman Center only to find that it was closed, so we turned right back around and headed to the hospital cafeteria. I was actually able to eat a little bit of rice, which is the most solid food I've eaten all day. It was nice to have visitors and having some food in my tummy made me feel much better.

Earlier tonight Holly texted me, asking where today's blog post was.

Me: I'm too busy lying around and eating bon bons... apparently.

Holly: I know, I watched you do that all day today. I'll testify to Adam about it.

Me: You're supposed to be on my side. Tell him how I was forced to walk all over creation before I was allowed to eat a tiny bit of rice.

Now if you'll excuse me, I have to get back to my bon bons.

Monday, April 18, 2011

PICC on somebody your own size

 "A peripherally inserted central catheter (PICC or PICC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).

A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, or brachial vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction."

I've never been fond of getting PICCs. Call me crazy, but something about having a tube shoved into one of your veins, then rammed all the way up to your heart makes me a little queasy. Okay, so maybe it's not that brutal but it sure feels like it sometimes. This week my disdain for PICC lines reached a whole new level.

I've never been an "easy stick". In my short history with PICCs (my first one was about a year and a half ago) I've been told by multiple people that I have some of the most difficult veins they've ever dealt with. Even with a double dose of sedative, they have a hard time getting my little veins to cooperate.

The PICC I got on Friday ranks near the top of my list of Most Traumatic Life Experiences. Seriously, I think it even beat Lawnmower Severing Achilles Tendon. The first poke was unsuccessful so, after a generous amount of poking and prodding, they chose another vein nearer to the artery. As it was explained to me, there are some nerves that exist around the artery in order to protect it and, well, sometimes those nerves are irritated by the PICC. The first twinge wasn't a big deal - a little bit of tingling was all. But they got much worse after that. Each time they tried to push the line in further, my entire arm felt as if it were being electrocuted, from my shoulder to my fingertips. I've only experienced that level of pain a few other times in my life, and my daughter is a result of one of those.

This is a picture of the "good" one
They finished the procedure and told me to alternate ice and heat on the site to help with soreness and swelling. My arm was so sore that I kept it bent and pulled into my chest for several hours. Later in the evening I reached for something on the nightstand and ZAP! Apparently the PICC was placed just so that when I made certain movements (straightening my arm, twisting my wrist) that irritated nerve sent out a shock. I tried to tell my doctor that I could just keep my arm bent for the next two weeks, but he seemed to think that wasn't a great idea. So Saturday morning I got another PICC. Although it took nearly an hour and it was still a "pain in the ass" (the exact words of the PICC team) it was a much less traumatizing experience.

So, we're now talking about the possibility of a port (a permanent catheter, surgically placed under the skin on the chest). It seems like just about everyone I've talked to loves their port and only wishes they would have gotten it sooner. I didn't really think I was "ready" for a port, health-wise, since I've only ever had 5 or 6 PICC lines, but my doctor and the PICC team seem to think it would be a good idea for me and my particularly difficult veins.

I guess we'll have to see how it turns out. For now, I'm just grateful to have a fully functioning arm again.

Friday, April 15, 2011

Just a quickie

After the weekend, I'm hoping to post a lot more. But for now, here's a quick rundown of today's events:
  • We got up early and began the 2+ hour trip to clinic.
  • I spent about an hour and a half of that time rehearsing in my head what I was planning to say to my doctor in order to weasel my out of the entire two week stay. I was hoping I'd be able to talk them into a week inpatient, followed by two weeks of home IV therapy.
  • The time that wasn't spent planning and rehearsing was spent praying that Adam's defensive driving would not be the death of us today.
  • We dropped Morgan off with a friend who lives literally right off the freeway.
  • Immediately upon leaving their driveway, we became lost. So I had to call for directions -- to that freeway we'd just been on minutes before. The freeway I could actually see while I was talking on the phone. Have I ever mentioned that neither Adam nor I are city drivers? I mean, you put me on a street with more than two lanes and it's like putting a chihuahua behind the wheel. We both get all bug-eyed and shaky. But I piddle less than the chihuahua. Usually.
  • We made it to clinic safe and sound. That is, if you don't count the encounter Adam and an elderly woman had on the freeway in which one or both of them may have flipped the bird.
  • PFT's came first and they were, well... how should I say this? Horrible? Shockingly low? I'm going to stick with what my doctor said and call them "a little bit awful". They have dropped nearly 30% from one month ago!!!
  • At that point I could see my plans to negotiate literally grow legs and run far, far away.  
  • Two hours later, I was shown to my room -- the very same room I was in just four months ago, by the way.
  • About an hour after that I experienced the most traumatic PICC placement I've had to date. Let's put it this way, if I had to choose between pushing another human being out of a very tiny part of my body or having that PICC line placed again, I'd choose childbirth ANY AND EVERY DAY OF THE WEEK.
  • Our friends, Holly and Evan, brought Morgan and their boys to visit but I was so doped up from the Adavan they gave me before my PICC placement that I don't really remember much of what was said... or when they left... Sorry, guys.
  • Now I'm doing my final treatment for the night while Adam and Morgan are lying together reading magazines.
Aren't they just the cutest? That's "Tactical Weapons" she's looking at, by the way.
Like father, like daughter.

I hope to update often (as there really isn't much else to do once the family heads home after the weekend). I want to thank everyone for their help and well wishes. There are a few of you that I honestly couldn't do this without.

Wednesday, April 13, 2011

Sometimes

Sometimes breaking into tears for seemingly no reason is really an indication that my body is overworked and crying out for help.

Sometimes feeling a little "off" is just the start of feeling downright SICK, and sometimes a "funk" is just another name for a lung infection. Who knew?

I'm headed up to clinic on Friday and will likely be admitted for the third time in 9 months. Sometimes, even when you do everything right, life kicks you right in the ass.

Sunday, April 10, 2011

The making of a Princess Party


My mom bought Shylee a Pink Princess Tea Party cookbook for Christmas, which means I've been promising Shylee that we'd have a princess party "someday" for a little over three months now.

"Someday" turned out to be yesterday.

(Even though I'd been up most of the night before with a fever, body aches, and relentless cough. I'd already told Shylee about the party and it would have broken her heart if I didn't follow through. Adam was kind enough to take the girls -- as in, actually leave the house -- for a couple hours yesterday so I could get a good nap in and I woke up feeling much better. Isn't he the best? Thanks, babe.)

It all started with cookies. While grocery shopping earlier in the week, I saw some Easter themed cookie dough with blue and purple chocolate chips. That's all it took to get the wheels turning, and just like that, a princess party was born.

I had two helpers* in the kitchen with me yesterday.



*I use the term "helpers" loosely here.


A few items on the menu: chocolate dipped banana chunks, Princess Candy Crunch, and cherry-vanilla cream soda.



We had our party, complete with a princess tablecloth and princess plates, in the living room so we could also watch a princess movie (the girls chose Aladdin, during which Shylee mentioned she thinks it'd be a pretty good idea for me to buy an outfit like Jasmine's. Although her dad probably wouldn't disagree with that, I told her it's not really appropriate for women to dress the way Jasmine dresses all the time, but maybe I'll consider it the next time Arabian Princess Day rolls around at work.)

 




Adam wasn't fond of the idea of being too near anything containing that much pink, especially when he learned that princess attire was a requirement, so he did his best to steer clear of the living room. He did come around long enough to snap a quick picture of the three of us though.


Shylee is eager to try more of the recipes and has been flipping through her cookbook, picking out which items she'd like to make next time. "When can we have another princess party?" she asks.

"Someday," I tell her, "someday."

Friday, April 8, 2011

A less expensive hobby


Until last summer, I hadn't been to the dentist for five years.

I began experiencing painful sensitivity to both cold and sugar which was making it difficult for me to eat things like Skittles and Tootsie Rolls. I wasn't sure how I'd survive if such a vital part of my diet was off-limits, plus I thought maybe it was time I put the dental insurance I'd had for three and half years to use, so I finally caved and made an appointment with the first dentist someone suggested.

During that initial appointment I was pleasantly surprised to discover that my new dentist was... well, let's just say he certainly wasn't the worst thing to look at (some of you may remember a previous post about this). But more importantly, as it turns out, he is the best dentist I've ever had!

In the past year I've had more dental work done than I had in the previous ten years. Part of that is due to my own neglect, part is just plain bad luck. I've had four cavities filled, two teeth pulled, one broken tooth, one root canal, two temporary fillings (both of which fell out as the tooth around them chipped away) and I'll be getting a crown done on Monday.

The ladies I work with tease me that I'm just using my "bad teeth" as excuse to get some time in with Dr. Beautiful. I try to tell them that's not the case -- that if I were looking for a new hobby, I'd choose something less expensive than crushing on the dentist. But they remember all too well a certain dream I may have had about said attractive dentist. (Yes I tell my coworkers about inappropriate dreams. I mean, why wouldn't I? I tell the entire internet.)

Anyway, the joking has been fun and has become a "thing" between me and several people I know, but I feel the need to make an official statement that 1) he is honestly a very, very good dentist 2) I am a happily married woman, and 3) I DO NOT GO TO THE DENTIST SIMPLY BECAUSE HE IS ATTRACTIVE... but it does make sitting that chair a bit easier.

After the crown on Monday, my teeth should be in pretty good shape and these excessive visits to the dentist's office can hopefully come to an end. Then maybe I'll finally get around to doing something about my terrible eyes.

A lady I work with tells me the local opthamologist is a fox...

Energizer Mo



Kid can bounce like this for hours. I'm trying to find a way to bottle that energy. We'd make millions. And then we could buy ALL THE BOUNCING ZEBRAS IN THE WORLD!

Friday, April 1, 2011

I've never been so ashamed

As I was driving home from work earlier today I found myself groovin' to a tune I've heard before, but never really paid attention to. This is a pretty catchy tune, I thought. It'd be a great song for dance parties in the kitchen. I should find out who sings it.

When I looked into it a little more, I was ABSOLUTELY HORRIFIED.

It pains me deeply to admit that Morgan, Shylee and I have watched this four times now.


I'll understand if you want to stop following my blog now.