Saturday, December 15, 2012

The good and the bad

The good news is: I've been here a week and seem to still have most of my sanity intact. 
The bad news is: When I say "here" I mean the hospital. Yep. After just a month of freedom, I'm back in the clink! It was a rough month and I'm anxious to finally get feeling better so I'm in pretty good spirits about being here (yet again). But I do have to admit, the last few months have felt a little bit like, "Go directly to jail. Do not pass Go. Do not collect $200." I'm hoping next month is a little more, "You win the lottery. Advance token to nearest five star resort."

The good news is: I had my Day 7 PFTs yesterday and they showed significant improvement, so I'm hopeful that this course of treatment is working.  
The bad news is: Despite the improvement in numbers, I don't feel as good as I should be feeling eight days into an admission. I picked up a virus shortly after I got here (possibly on one of my trips to the cafeteria?) and have been fighting a sore throat and runny nose for the past few days. I'm keeping my fingers crossed that it doesn't turn into anything that will prolong my stay or make it necessary to be admitted again anytime soon. (I've had enough of this place for, oh, the next few years at least!)

The good news is: Because my port was removed  when I was here last month and I've had a notoriously difficult time with PICC placements, I was able to get my line placed in radiology (all the better to sedate you, my dear) which made for the least traumatic PICC placement I've had to date.  
The bad news is: Trying to start a peripheral IV so that it was possible to receive those handy-dandy sedation drugs was a less than pleasant experience. There aren't a lot of things in life that I truly excel at, but I know at least four nurses who would agree that I'm the Valedictorian of Crappy Veins.

The good news is: I was able to see all of my siblings on Thursday, including my brother from San Diego and my sister from Ohio who I haven't seen in over a year. Since I'll miss the family Christmas parties this weekend, they decided to bring the party up to me. We had an extra fancy holiday feast in the cafeteria, and the kiddos (and my brothers) even decorated my room with snowflakes, garland and an adorable little tree.  
The bad news is: As great as it was to see everyone, I'd rather be enjoying their company outside the hospital.


My heart has been heavy the past couple days as so many people I know seem to be struggling in one way or another right now. Yesterday's news out of Connecticut seemed to top it all off and this afternoon, after Adam and Morgan left for home, I sat down and had a good cry. There is so much about life that I'll never understand, so much darkness. But at the same time I'm overwhelmingly grateful for the blessings I have in my life. I was able to snuggle with my baby girl all night long, I kissed my husband today, I woke up breathing and all my basic needs have been met today; in a world that sometimes makes no sense at all, that's all we can really ask for some days. 

Ultimately, no matter how much I wish I were home instead of writing this from a hospital bed, I can recognize and appreciate the fact that there's a lot more good than bad in my little world right now. I hope the same is the case for each of you.

Thursday, November 29, 2012

Difficult, but oh-so-awesome!

"Mama," Morgan says, looking up from her bowl of Cap'n Crunch. "Where am I going today?"

It's a question I've heard countless times, often within the first few minutes of her being awake. She's always liked to know where she'll be spending the day while I'm at work. For the past three years the answer has almost always been, "You get to go to Mindy's today." Occasionally if Mindy (Morgan's babysitter/second mom) was out of town the answer would be "you get to go to Grandma's" or "today you're going to play with your cousins at Aunt Megan's house!"  

But this morning, as it has been for the past three weeks now, my answer was different. This morning I walked over to the table where she was eating, scooped her into a hug and said, "You don't have to go anywhere, honey. Today you get to stay home with Mama." 

~~~~~~~~~~~~~~~

Quitting my job was not a decision I came to easily. Early last year when I was struggling with my health so much, spending two weeks in the hospital then only being home for 3-6 weeks before having to turn around and go right back in, some of the staff suggested that maybe it was time for me to start looking into disability. At the time I thought that was a ridiculous idea! I mean, I'm not disabled. I'm capable of working. Sure, I was struggling and I'd spent a lot time away from work, but I told myself I was just going through a rough patch. I'd get back to "normal" soon enough and all this talk of disability would be a thing of the past. I did end up cutting back to part-time last summer because, as much as I hated to admit it, I just never got feeling as "normal" as I thought I would. 

I've never talked about my job much here for a few different reasons, but I spent the past six years working Utah Heritage Credit Union, by far the best (and until recently the only) credit union around! I really liked my job, I loved my coworkers dearly, and I really enjoyed interacting with the members of the credit union each day (okay, let's just say I enjoyed most of them). Over the years they became more than just coworkers and friends, they became a second family to me... my work family

As much as I loved my job, working with the public (and dirty, dirty money!) is admittedly not the best environment for someone who is sensitive to germs. Cold and flu season was always really hard on me. We used to joke at work that if someone within a three mile radius sneezed, I'd come down with a cold. It really doesn't matter how sick a person is, they still come out to do their banking. I can't tell you how many times someone would come in coughing, sneezing, and wiping their nose as they walked up to the counter, then they'd lean in real close and say something like, "I'm soooooo sick! I just left the doctors office and need to go pick up some prescriptions." Between the crap I picked up from work and all the germs Morgan was exposed to at the babysitters, we spent a good portion of the fall, winter and spring months fighting some kind of sickness. 

One of the major reasons quitting my job was such a difficult decision: income, obviously. I didn't make a ton of money by any means, but it was enough to help make ends meet. We have been very dependent on my income as well as Adam's, and the thought of suddenly losing it was (and still is) terrifying! I've always wanted to be a stay at home mom, and deep down I've known that it would be better for my health. But I wanted to do things on my terms. I didn't want to feel like I was being forced to quit or that the decision was being made for me. I'd quit when we were financially stable enough for me to stop working, and most importantly, when I was ready to. Call me stubborn (or maybe just plain stupid) but I really thought I was in control of the situation and I wanted it to stay that way. 

This recent experience with the blood clots was what finally brought things into perspective for me. I'd gone to work that day... before I knew what the issue was, obviously. I spent all day in extreme pain, fighting for each breath, trying to keep a smile on my face and do my job. And in those moments I started feeling incredibly resentful and sorry for myself. "I should be home in bed. Nobody else has to come to work when they feel like they're dying. Nobody else has to smile through the pain or sickness, pretending everything is fine." 

And then I started thinking back to all the times I'd come to work with a raging fever or feeling so short of breath that I had a hard time walking to and from the drive-up. All the times I couldn't eat anything because my antibiotics were making me so sick to my stomach, but I still went to work. All the times I rolled out of bed and got ready for work after only getting two or three hours of sleep because I'd been up all night coughing. That time I was in a leg cast, on crutches and on IV antibiotics for my current lung infection, but I still thought I needed to be at work. 

And that's when I started thinking, What the hell am I doing? 

All that I went through in the next couple weeks made me realize that sacrificing my own health and time spent with my family wasn't worth any amount of money. Though I knew I'd miss working and socializing with so many people each day (I'm such a people person) and I had absolutely no idea what we would financially, I knew I couldn't live in denial anymore. I needed to be home. 

And so... I'm now a full time mom and housewife. Though I haven't quite mastered the housewife thing, as evidenced by my still very messy house. I've asked Adam to be patient with me and he has been absolutely wonderful. It's been a little over a month and I still haven't fully regained my strength and energy, but when I do... watch out! I definitely plan on getting things in order around here! This is definitely the biggest, most life-changing decision we've made in a very long time. There have been times that I long for adult interaction and days that I seriously question whether or not I did the right thing, but every shred of doubt goes right out the window when we kneel down to say prayers at night and Morgan says, "Thank you me and my mommy can be home today... and bless my daddy be safe at work... and thank you me and mommy can be home." 

I'm anxious to see how things work out and I'm definitely nervous about all the uncertainties, but I'm so happy to finally be doing what feels right! 

Wednesday, November 14, 2012

Catching up

So, where did I leave off? Oh yeah, probably the worst place I possibly could have, and then I disappeared and didn't write anything for a week and a half. Sorry about that. 

My brother sent me these pictures (taken by my dad shortly before I was sent away in the ambulance) and I wanted to post them so that 1) you could all bear witness to the fact that I waited way too long between dye jobs (look at those roots!) and 2) so you could see for yourself how fantastic my family is. 

Since Adam was about two hours away and several miles underground at work, both my brother Tommy and my dad were with me in the ER that night. They took turns wrapping me in blankets, getting me water and rubbing my back which provided some relief from the pain. Tommy stayed with me right up until I was wheeled out of the hospital and then he, my dad and Adam all drove up behind the ambulance. The men that I have in my life? Fantastic, I tell you! They really don't get any better. 


You can read more about the ER visit here

The days following that ambulance ride were some of the worst of my life. I was sleep deprived, in a terrible amount of pain and absolutely terrified. I was being well taken care of and I know I must have been on some good drugs because there's a solid week that is just a blur in my memory, but apparently I was in pretty bad shape.

Visitors were in and out of my room, some that I don't remember seeing at all. I have a collection of saved voicemails, facebook messages and entire text conversations that I have no clear recollection of sending/receiving. Adam and my cousin Niki laugh about how I'd be sitting up in bed having a conversation when all of a sudden they'd look over and I'd be sound asleep, still sitting upright. I actually fell asleep while I was going pee one day (fortunately Adam was right there to wake me up/make sure I didn't fall off the toilet and crack my head open) and apparently I thought it was hilarious enough to re-tell that story multiple times a day... several days in a row. Again, I blame the drugs.



At some point during the first few days of my stay they discovered that not only did I have multiple blood clots throughout my lungs, but a clot had also attached itself to the tip of my port (in my heart). My doctors began talking about removing my port because some of the other symptoms I was having led them to believe it was infected. (Since I'd already received antibiotics at that point, all the blood cultures came back negative so really, there's no way we'll ever know if it was infected or not.) The problem at that point was that pulling my port would risk dislodging that clot and possibly sending it down into my lungs. Since it was considerably larger than the clots already in my lungs, we had no idea what further issues that might cause.
Ultimately the potential benefits outweighed the risks and my port was pulled. Fortunately the surgery was a total success and everything went as well as it possibly could have.

After several days of being in the hospital (receiving more medications and being hooked up to more monitors than I thought was possible) things finally started looking up. I remember thinking one day, "I can actually feel myself getting better today!"

My brother Jason drove up from San Diego and stayed with me the night of the port removal, and then again the night after that. It was great to see him and actually get to spend some time with him, though the circumstances definitely could have been better. He was around to witness some of the worst and most painful moments for me, which probably wasn't easy for him, but he was also the one who got to witness my most drugged-up moments which will provide entertainment for years to come, I'm sure. ("Did you eat a good candy?") Jason, if you're reading this I want you to know how much it means to me that you were there. I'm lucky to have you and I love you so, so much! Thanks, Big Brother.

This is probably the WORST picture ever taken of me, but it was a
momentous occasion  -- I finally had an appetite and needed some
 hash browns! Also, this was about five days into my stay and
it was the first time I'd ventured out of my room. 
I'm home now. I've actually been home for a week, but things have been so different this time. I usually come home feeling pretty great, but this time I came home feeling very blah. My lung function was significantly below my baseline when I left the hospital, but I'm told that's to be expected. Apparently blood clots take weeks to dissolve and reabsorb, and as long as they are in there, my lungs won't be able to function properly. Once the clot issues are resolved, I can start working on getting my lung function back up where it needs to be.

Treatment for blood clots, as one might assume, is blood thinners. I could (and probably will) write an entire blog post about my experiences so far, but for now let's just say that blood thinners are going to make the next few months very interesting.

These were taken when I was feeling quite a bit better.
Adam drove up after a graveyard shift one morning so Morgan
and I spent the afternoon doing crafts while he took a nap. 
The best news is, well, first of all that I made it! I'm alive and (relatively) well. Also great news? This incident shouldn't have any long-term effect on my health. I should be able to bounce back and do just fine. This was by far the most critical and terrifying experience of my entire life, but some good did come of it. When a person finds themselves lying in a hospital bed, forced to examine their life and ask what they'd do differently if they could, it really opens the door for change... and guys, I can't wait to tell you some of the things that are changing around here!

Sunday, November 4, 2012

The ER Story a.k.a. "My birth control is killing me"

"I think I may have pneumonia," I told the nurse when she asked what had brought me into the ER that night. "Either that, or my birth control is killing me!"

Turns out, both may have been true. 
The pain started on a Monday. I had called in sick to work that morning and had spent most of the day curled up on the couch with Morgan, watching TV and nursing our colds. At one point, when I awoke from one of our short naps that afternoon, I noticed a dull pain in my back near my left shoulder blade. Thinking I must have slept on it a little weird (being that both Morgan and I were squashed together under the same blanket on one end of the couch for several hours) I tried to work it out with a few stretches and didn't think much more about it.
Later that night though, the pain had gotten much worse. It had spread about half way down my back and seemed to intensify with each breath I took. I began wondering if I'd somehow pulled a muscle during one of my coughing fits. The last time I remembered experiencing anything similar was in 2009 when I had a really terrible case of pneumonia. As I got ready for bed, I was feeling enough shortness of breath that I decided to use oxygen - something that is rarely necessary for me. Knowing only that I had stayed home from work because I was feeling some cold symptoms, Adam was surprised to come home and find me in bed wearing oxygen. "Is it that bad?" he asked, realizing this must be more than a cold.

I was finally able to get some sleep after a generous amount of ibuprofen and a back massage from Adam. On Tuesday morning I woke up feeling a bit better, so I took some more ibuprofen and went to work but about half way through the day, I knew something was seriously wrong.  By the time I'd talked myself into going into the local ER, I literally felt like I was being stabbed in the back with a knife each time I took a breath.

"So, it hurts when you take a deep breath?" the nurse asked. "No," I told her. "It hurts any time I take a breath. Simply existing is painful right now."
I explained how and when the pain started, and I also told them about the other strange symptoms I'd been having in the days leading up to that -- heart flutters, a very heavy and loud heartbeat, my right arm aching and tingling for an entire afternoon and evening. I'd done a little research and learned that those things could all be related to the new birth control pill I was on, so I'd already made the decision to stop taking it. Unfortunately, I also discovered that birth control can cause some other very serious problems (blood clots, sudden loss of vision, stroke, etc. -- seriously, Google your birth control, or don't if you'd rather not be totally freaked out) so of course the irrational part of my mind (which, let's face it, is a pretty significant percentage of my brain) was telling me that the very worst was happening.
Fortunately, the ER doctor took me very seriously and was incredibly thorough. After a few hours of testing (during which time the pain was getting worse and worse despite their attempts to control it with IV medication) she calmly came to my bedside, looked me in the eye and said, "Well, it looks like you do have pneumonia... and a Pulmonary Embolism."
My reaction? A very un-ladylike "HOLY SHIT!"
The entire time I'd been there, I'd been making a conscious effort to hold myself together. I thought that if I could just stay calm, everything would be fine. Even though I knew it was a remote possibility, I really didn't expect such a serious diagnosis. As soon as she said the words "pulmonary embolism" any and all self-control I had up to that point went right out the window. I was a wreck! The pain seemed to escalate with my emotions until it reached a point where it was almost unbearable; honestly, the worst pain I think I've ever felt.

Adam was at work and had no idea that I had even gone into the ER. My brother called the coal mine office to tell them what was going on so they could get the message to Adam underground. I wanted so badly for him to be there with me, and it was heartbreaking to think of what he must be feeling when they told him, "Your brother-in-law called and you've got to go home, dude. Something's wrong with your wife." (Which is how he tells the story.)

I was immediately hooked up to a heparin drip and the staff began making preparations for me to be transported by ambulance to the University of Utah. From that point on, all I wanted was to get out of there. My anxiety level was through the roof! I just kept thinking that I needed to get to the U and that if I could just get to my hospital with my doctors and nurses that know and love me, I'd be okay.

I took a few minutes to text Adam even though I knew he wouldn't get the message until he was out of the mine and on his way home. I was terrified and wanted that message to convey everything I would have said to him if he were there by my side - that I loved him, that he has made me so incredibly happy, for him to be sure he'd give Morgan hugs and kisses and tell her Mama loves her very much. After I sent it, I realized it sounded like a goodbye... and maybe part of me thought it would be. I honestly felt like I was dying.

It took quite a while for all the arrangements to be made, but eventually it was time for me to go. I  hugged and said goodbye to my brother who had been in the ER with me for the past couple hours, then they wheeled me outside. As they lifted me into the back of the ambulance this strange sense of peace settled over me and I suddenly knew that whatever were to happen that night, everything would turn out okay. Right then and there I decided that whatever this thing was, it wasn't going to win. I was ready for a fight!
To be continued...
Click here for Part 2

Wednesday, October 31, 2012

Just for tonight

Tonight I need to do something I don't let myself do very often -- write exactly what I'm feeling without interjecting any humor or putting a positive spin on it. Tonight I just need to get everything off my chest and hopefully tomorrow I'll wake up feeling lighter, happier, more like myself.

The truth is, I'm really struggling.

I'm struggling with the fact that I'm back in the hospital just weeks after I left. I'm struggling with the fact that by the time I'm discharged from this admission, I will have spent a total of eight weeks in this place since the beginning of the year. Two out of the last ten months of my life have been spent within these hospital walls!

I'm struggling with how serious the issue was this time around, how incredibly sick I got, and the way it's taken me an entire week to feel strong enough to be out of bed, walking around. I'm struggling with how many people I consider to be very important in my life still didn't call or visit... have never called or taken the time to visit when I'm in the hospital.

I'm struggling with the fact that I wasn't home to get Morgan dressed up and take her Trick-or-Treating tonight; that I've missed several other holidays and special occasions (Easter, her first birthday party, Fourth of July, etc) because I've been here.

But most of all I'm struggling with the bitterness I can feel inside me this time.

I don't want to feel sorry for myself and I really don't want to be angry, but I just can't shake the darkness I've been feeling the past few days. Sure, I get through the days okay. I can laugh and joke with the nurses, I can hold normal conversations with people and now that I'm feeling a little better, it's really not that difficult to convince everyone that I'm back to being normal, happy Jenny.

But in the quiet moments, when the lights are off and I'm lying in my hospital bed alone with my thoughts or when I get off the phone with Morgan and the tears start rolling down my face, I feel it so strongly - this heartache and frustration that is becoming far too commonplace in my life.

I'm okay, really. I suspect that within a few days I'll get out of this funk and honestly start feeling like myself again. I know that I'm blessed and have so much in this life to be grateful for. I realize how fortunate I am compared to so many others out there, and I make a conscious effort to not take those blessings for granted.

But for now, just for tonight, I need to be able to cry and say that this sucks. This is really hard. This isn't fair, and it's absolutely terrifying.

Monday, October 29, 2012

That time I thought I was dying

Details and "the rest of the story" will follow but for now, here are a few of the highlights:

- I'm in the hospital again.

- I scored my first trip in an ambulance on Tuesday night after having spent most of the evening in my local emergency room.

-The crippling back and chest pain I was experiencing with each and every breath in addition to the unusual heart palpitations I'd had a few days earlier made for an excruciating interesting evening of physical and mental torture all kinds of medical testing.

- The diagnosis: Pulmonary Embolism

- More tests conducted when I arrived here at the U of U revealed that there were actually multiple clots in both lungs, as well as one slightly larger clot in my heart that had attached itself to the tip of my port.

- We are about 98% certain the blood clots were caused by my birth control (which makes the text message I sent to my cousin a few nights before the incident that read "I think my birth control is killing me!" seem a bit less dramatic).

- At one point I had three separate points of access to accommodate all the meds they were pumping into my body - my port plus two peripheral IVs.

- That was before I went into surgery to have my port pulled; now, several days later, I'm down to a dual lumen PICC line. I was able to properly grieve the passing of my port when my surgeon brought it to my room in a bag later that night so I could say goodbye.

- One day (I think it was Thursday?) I decided to count the number of needle-sticks I got in a 24 hour period. I lost count after nine.

- This has been without a doubt the most terrifying and painful experience of my entire life! Almost a week later, I feel like my head is still spinning. I'm physically, mentally and emotionally exhausted and still in pain a lot of the time, but I do feel like things are getting better each day.

- For everyone who has been aware of the situation, I want to let you know how much I appreciate your positive thoughts and words of encouragement! Adam and I couldn't have made it through this last week without your love and support. From the bottom of my (slightly malfunctioning) heart, thank you, thank you, thank you!

Sunday, October 7, 2012

My God given right as a parent

The other night the girls and I were in Wal Mart picking up a few last minute items to prepare for my sister in law's wedding when Shylee said, "Jenny, my stomach is hurting."

"Did you eat too much," I asked.

"I don't think so."

"Do you need to poop?"

"Ew," she said, disgusted, "NO!"

"Are you sure? I bet you need to poop."

"I'm SURE! And I think those people right there can hear you, " she said, pointing.

So I said a little louder, "It's okay. Everyone poops. You don't need to be shy about it."

That's when she took as step toward me, motioned for me to come closer and whispered, "I really don't need to poop.... and you're kind of embarrassing me."

Still crouched down so I was at her eye level, I sweetly said, "Welcome to the rest of your life, kiddo."

I can't decide whether this makes me an awful person or if it means that I'm finally magnifying my calling as a parent.

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!   

Monday, September 17, 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.


Visitors:

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.)
 

SUPERMAN!!!
 
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! 

Tuesday, August 21, 2012

Thinking

Whether or not this hole closes up eventually, I'm pretty sure it's going to leave a pretty gnarly scar.
(Tongues scar, did you know? At least that's what I've been told.)
Years from now at a party, I can totally imagine this kid sticking her tongue out and excitedly telling all her buddies about the time she almost bit it off. Except knowing Morgan, the story will most likely have evolved from "I fell off my grandpa's piano bench" into "that time I crashed a helicopter in Vietnam." 

Monday, August 13, 2012

August 2012 Newsletter: 3 years old


Dear Morgan, 

This weekend we celebrated your third birthday. Three years old!?! When and how did that happen? Unfortunately you weren't able to enjoy much of your birthday this year because a few days ago you decided to try to bite your tongue off. I'm not even kidding. Had those sharp little teeth of yours bit down any further, you would have lost about half your tongue! Several hours of crying, a trip to the emergency room and one very nervous momma made for the kind of evening I don't ever want to repeat. But the fact that you still weren't eating (or even really opening your mouth, for that matter) by the time your birthday party rolled around meant that I got to eat your ice cream and help you blow out your candles.

Not gonna lie, that part was pretty rad.



Your dad and I have recently reached a point where we are consciously having to stop ourselves from saying certain words around you because of your fondness for repeating them. It's not that we curse a lot... well, okay it is that. It's exactly that. It's not a fact I'm necessarily proud of, and I promise that we've both been trying to do better since you came along, but when I overhear you telling a spider "get outta my house you little bastard" I realize there is definitely room for improvement. So we've found ourselves replacing swear words with ridiculous things like "goo head" or "holy lampshade". Basically anything that we can think of that we won't be embarrassed by when you decide to repeat it in front of my grandma. 

One word that we've been saying a lot, thanks to you actually, is "soaking". One afternoon, after spending hours in and out of the kiddie pool in the backyard, I told you that it was time to come inside because you were soaking wet and it was getting cold. "Yep, I'm soaking wet!" you said, but later it became, "That was soaking fun!" And since that day, you seem to use that word any time you need to describe something.

You're soaking crazy, Mom.
That's soaking awesome!
I'm soaking tired.
This mac-n-cheesaroni is soaking good!



Almost every day, after I pick you up from the babysitter's and we're on our way home you'll ask me if Shylee is going to be there. You love your sister, always have. Only now, that love has transformed from an innocent, sweet, totally-in-awe love into the kind of love most siblings share -- a teasing, competitive, I-can-totally-punch-harder-than-you type of love. 

If it's been a while since the two of you have seen each other, the first couple hours of your reunion are wonderful. You greet her with a giant hug and your enormous smile and the two of you rush into your bedroom or out into the yard to play. But it's isn't long before your care-free, balls out approach to life starts cramping her style and I hear Shylee shout something like, "Jenny, Morgan isn't playing the game correctly" immediately followed by you making a mad dash through the living room butt naked, holding a headless Barbie in one hand and a handful of half-eaten crayons in the other. She likes her toys put neatly away or placed in small, organized piles in the corner of the closet. You like them dunked in the toilet, thrown down the stairs and then buried in various places throughout the backyard.

Recently (after hearing about the bug you carried around in your pocket for an entire day, occasionally pulling him out to ask "hey bug, you dead?") a friend of mine told me that you have a very interesting personality. That you do, kiddo. In fact, I would dare say that you are the most interesting person I have ever met. You are not a typical little girl in that you absolutely love bugs, dinosaurs, tractors and monster trucks. You know the names of the Disney Princesses not because you enjoy watching princess movies, but because your sister makes you play her princess matching card game with her. You prefer movies like Megamind and Open Season over those silly ol' princess movies any day. You love to shoot guns with your daddy, and the volume and strength with which you belch after a good drink of chocolate milk could put a drunken old man to shame. Yet you're still very much my sweet little girl. 



You love to cuddle and probably four out of five mornings you find your way to our bedroom before it's light outside, lift up the covers and snuggle right next to me until the sun comes up. You know you have a spot next to Mama and you are always welcome to come cuddle up there. 

The other night after you hurt your tongue, you slept next to me all night. As you tossed and turned, crying out at times, I thought about the events of the night and right then something happened: I got it! I suddenly understood fully and completely how a person could do anything for their child. I always knew I loved you deeply, even before you were born, there's never been any question about that. But this was a different feeling, one I don't really know how to articulate. This was the feeling that I never wanted to see you hurting, that I would gladly do whatever was necessary to take your pain away, that I needed to take that pain from you, even though I knew there was really nothing I could do. 

Morgan, my whole life I've been the one in hospitals, undergoing surgery and endlessly being poked by needles, but it's been okay. I've tried to be tough and most of the time I handle things with at least a little dignity. But when your dad drove us to the hospital that night, I was a total wreck. Simply anticipating the fear and discomfort you would feel was enough to break me and I cried the whole way to the hospital. Heaven forbid anything more serious ever happens to you because I almost didn't make it through a little tongue biting! 


You've not been yourself since your little accident. You've said maybe a total of 25 words in the past four days, you've been whiny, you've been sad, you've refused to eat (I've been keeping you alive with juice, Ensure and Scandi Shakes) and you haven't been sleeping well. Just tonight, a couple hours ago in fact, you finally ate something! I gave you just a little bit of oatmeal, not expecting much but hoping you would at least try it. It took a little while for you to build up the courage, but eventually you took a bite and as soon as that oatmeal hit your belly, you immediately transformed back into the little girl I know and love so much. You shoveled the rest of the oatmeal in your mouth, then promptly asked for more. 

After finishing the second bowl you began telling me all the things you've been dying to tell me over the past four days. It's like all the words had built up inside of you and now that you were feeling a bit better they were just spilling out uncontrollably.


You talked while you changed into your jammies. You talked while I took your ponytails out and brushed your hair. You attempted to talk while you (gently) brushed your teeth. You talked while I tucked you in, and you continued to talk after I had kissed you goodnight and closed your bedroom door. As I quietly sat outside your door listening to you jabbering away on the other side I thought to myself, "I'm glad you're back, kiddo. I soaking missed you!" 

Love, 
Mama