Wednesday, November 25, 2009

Home, where I belong

I AM GOING HOME!

Never in my entire life have any words sounded so sweet.

I don't think I'll be posting much in the next little while. I plan on devoting my time to treatments, exercise, more treatments and RIDICULOUS amounts of cuddling with Adam and Morgan.

Tuesday, November 24, 2009

Thinking...

Life is hard. And then you decide to breastfeed, suddenly become seperated from your baby and end up having to pump.

Morgan owes me big time for this one... when I get home, she'd better let me nibble on those cheeks extra long.

Monday, November 23, 2009

Wherein the sarcasm gets a bit heavy

Sarcasm is a beautiful thing. I know that some people strongly disagree (Hi Mom!) but a little bit of sarcasm goes a long way in getting me through each work day, and I'm convinced it's what's kept me sane during this hospital stay. Nothing brings out the sarcasm in me like stupid people, which seem to be in abundance here. Don't get me wrong, they're all very nice. But no amount of nice can replace dumb.

Some of my favorite things I've heard so far are:
"You're only 22? What a short life."
"That cough doesn't sound good. Are you getting sick?"
"You have CF? Have you had it long?"

Please keep in mind these comments are coming from people working ON THE CF FLOOR! Seriously. The whole situation reminds me of every time I see Lady Gaga perform and I feel like grabbing her by the shoulders, violently shaking her and saying "Lady Gaga, PLEASE tell me you are joking! This is ridiculous!" Unfortunately, Lady Gaga and the nursing staff here ARE NOT JOKING.

Although, I will give credit to the few good nurses I've had. The ones who actually know what they are doing and how to work the equipment. The ones who don't ask a single stupid question all day. And that one male nurse in particular who just happened to smell like heaven. I'm very happily married so I won't say that he was attractive, but I will tell you that my heart rate was unexplainably a little high all day. (Hey, I may be married, but I'm also human.)

Something else that's fun...Today when I woke up I noticed a bit of a rash starting on my thighs, right near my bum. By this afternoon it had spread to my arms, chest and stomach. Now it's literally everywhere, including my face. I'm pretty much just one giant, walking, talking, itchy, red hive.

The good news is that I've successfully been weaned off oxygen! When I came in I was on 6 liters, so the fact that I'm no longer dependent on it at all shows that I am indeed making progress. There is finally an end in sight, and I couldn't be happier. Because if one more nurse asks me how to work a CADD pump I'll be very tempted to just pick up my things and start walking home.

Sunday, November 22, 2009

Update

I just wanted to give a quick update. I did PFT's on Thursday and my FEV1 was up to 40%. Still very disappointing and incredibly low, but much better than 27%. When my doctor stopped by my room this morning he told me he thinks I've made a lot of progress in the past three days especially. He said he can see that I'm improving physically and emotionally each day. He is very optimistic and thinks that I can be up to 70% by the time I have PFT's again this Thursday. I, however, am not quite so optimistic but at least it gives me a goal to work towards. I'm terrified at the thought of going home with such low lung function, so I hope he is right.

I'm still having quite a bit of chest/back pain. After extensive observation, it has been determined that the pain isn't coming directly from my lungs, but that it's more muscular. They think that the tissue between my ribs has become sensitive from all the coughing and heavy breathing and that the muscles throughout my back have just been so overworked that they spasm every now and then. Also, my body is quite intolerant of the hypertonic saline they've been giving me during treatments. It tightens my chest up almost immediately and the pain just worsens from there.

The last blood test they did showed that my Tobra levels are high. Four days ago they were right where they needed to be, but at some point over the past few days that changed. They were so high, in fact, that it had started to affect my liver function. Needless to say things have been adjusted and I'm now being given a lower dose fewer times a day.

Overall I feel SO MUCH better. My energy is slowly returning and I feel a noticeable difference in my lungs every day. My sister in law and my dad both told me that I finally look like "Jenny" again. Things are getting better...

Friday, November 20, 2009

Is that a ray of sunshine?

My mood has improved considerably since yesterday and I credit it to three things.

Number one: I had a wonderful visit with Morgan yesterday. Tommy and Megan stayed here in Salt Lake with Megan's parents so they could be close and I was actually able to see Morgan two days in a row. My doctor explained to me that even though there is a ludicrous amount of medication being pumped into me 24 hours a day, the amount that would pass through my breastmilk was not necessarily harmful or easily absorbed through the baby's stomach. So not only did I get to see Morgan, I was able to breastfeed her! Now I'm sure there are some people out there who think it's just terrible that I would knowingly pass the medication on to her, but before you judge me for that you may also want to know that I regularly leave her home alone with a bottle of Mtn. Dew surrounded by various sharp objects and porn.

Okay, now you can judge me if you want, but all things considered I think the pros definitely outweigh the cons in this situation. I feel that the medications aren't necessarily the best thing for her, but I don't believe they will harm her. Also, if she can breastfeed even one or two days a week it will help me maintain my milk supply (pumping isn't nearly as effective) and it will help her remember what to do. I was afraid that two weeks on the bottle would make her forget how to breastfeed, or that by the end of my stay in the hospital she would just prefer the bottle. So, it was very comforting and encouraging when she latched on without hesitation. She's missed my boobies as much as I've missed her chubby cheeks.

The second thing that has put me in a good mood is that I actually ATE TODAY! Anyone who knows me knows that I do not lack an appetite. Nor am I picky. But I cannot bring myself to eat 90% of the food here. It's that terrible! I understand that they are producing an insane number of meals each day and that they need to take into consideration the diet of certain patients: low sodium, high protein, low fat, lactose intolerant, etc. But really, all I ask is that my milk is cold and that my grilled cheese sandwich doesn't resemble a dead goldfish.

Well today the recreational therapist asked if there was ANYTHING she could do for me. I was totally joking when I told her I'd kill for some good food, but the next thing I know she's standing in my doorway with TWO large orders of french fries...and they were STILL WARM! She also brought about six vitamin waters, some juice (I can't get enough juice!) and a fridge to store them in. I'm convinced she's an angel sent directly from heaven. And guys, I wish I was kidding when I tell you that I ate EVERY LAST ONE of those french fries.

The third thing is that I thought I was going to be on TV. Last night my doctor came in my room and asked if I was willing to be on the news. Apparently he's done a lot of research on a trial drug that would, if successful, completely change the lives of those living with CF. Last week there was a huge article in the Salt Lake Tribune (that I just read) and Channel 4 News is also doing a story on the research he has done. As part of that story they wanted to see interaction between Dr. Liou and his patients and also get a feel for what it's like to live with CF.

Well, I agreed. After all, it's not like I'm exactly new to this whole TV thing. During one of my stays at the Children's Hospital one of the local news channels was doing some sort of telethon fundraiser. As part of that I was interviewed in my room, then later I read the names of some people who made significant contributions. So see, there's a perk to having CF that not many people think about: it gets you on TV.

Anyway, the news crew visited another patient before me and apparently they got all the footage they needed. They stopped in my room and visited, but no cameras were rolling. The whole time I'm talking with them I'm thinking I PUT MASCARA ON FOR NOTHING??? No really, that's actually the part that made me a little cheerier today. Because I thought I was going to be on TV I actually got ready for the day. I put a little makeup on and I actually dried my hair after my shower! It's funny that when I'm home I won't leave the house without full makeup and my hair done. Here in the hospital, I don't care what I look like, so I do nothing. But today it felt nice to get gussied up a bit even if it ended up being for nothing.

I'm really trying to focus on the positive. It's quite a task, but I'm honestly trying. I opened my blinds and let a little sunshine in today. Into my room and into my soul. Tomorrow is another day and I WILL make it a good one.

Wednesday, November 18, 2009

Broken down

This is a difficult post for me to write, so I apologize in advance if it's not put together very well. I also apologize for all the negativity.

For the first time in almost a decade, I am in the hospital.

Almost two months ago I started feeling a little ill. In the mornings I'd wake up feeling considerably well, then things would gradually get worse throughout the day and by about 6:00 each evening I had terrible body aches and a full blown fever. I kept putting off going to the doctor because a) I'm stubborn b) I had used all my vacation AND personal time in the weeks leading up to Morgan's birth and for maternity leave, and c) because I felt well in the mornings, each morning when I woke up I was just sure it was THE DAY that I'd be better.

Finally, when I took Morgan for her two month check-up I told my doctor what was going on. She immediately told me I most likely had the swine flu and ordered some chest x-rays to be sure this "bug" hadn't moved into my lungs. Those x-rays revealed a small spot of pneumonia in the lower lobe of my left lung. I was put on oral antibiotics which made me feel okay within 24 hours, good within 3 days, and pretty great by the end of the week. I honestly thought I had caught swine flu and just as it moved into my lungs, but before it could cause any real damage, we found and treated the pneumonia. No big deal, let's just move right along with life. Right?

Last week I realized just how very wrong I was. The antibiotics I had been given were able to get the infection under control just enough to make me feel better, but they never actually killed the bug. Inside my lungs the infection continued to rage. I was admitted last Thursday with severe pneumonia in the upper and lower lobes of both lungs.

When I got here I was unable to walk into the hospital. I had to be wheelchaired everywhere we went. My oxygen sats were sitting at 73, so I was immediately put on oxygen. My FEV1 was 27%--by far the WORST it has ever been. I was experiencing crippling chest pain and was running a fever of 104 degrees. My heart rate was anywhere between 140-155 beats per minute. I was sicker than anyone anticipated, including myself.

I was put into the Intermediate Care Unit (just under Intensive care) for the first few days. Being in the IMCU wore on me quickly. It was embarrassing and annoying to have to ask for help anytime I needed to use the bathroom. By "bathroom" I mean a toilet sitting out in the open about 6 feet away from my bed. I was so incredibly tired, but unable to sleep. I got so sick of being asked if I could stand on my own. I got even more sick of having a nurse pop in every 20 minutes to be sure I was still hooked up to the moniters correctly.

I'm now in the new CF unit. From what I hear it was just opened last week. I keep hearing how nice and new and wonderful it all is. I guess since hospitalization is such a rare thing for me I don't truly appreciate the niceness or newness. To me it's still a boring, lifeless room. A place that reaks of illness. A place that isn't home and will never be comfortable. Most of the nurses on the floor don't seem to have much confidence in what they're doing. I'm not sure if they're new to CF, new to the floor or just plain new to nursing, but they keep asking ME questions that I feel THEY should know the answer to. I feel so out of place here. I don't know any of the hospital staff except the few people I've worked with in clinic. I don't know my way around. I don't know where to go for rehab tomorrow. I don't know the hospital lingo-I had absolutely no idea what a CADD pump was until a couple days ago and I still don't know what my nurse meant when she asked if I want my NS on at night. (I'll have to hit her up about that one.) This just isn't something I do. I'm not familiar with the hospital scene at all.

I miss my husband and baby more than I can describe. My heart breaks a little more each morning when I realize today isn't the day I can go home, and tomorrow won't be either. I feel like I can't get better physically when I'm so emotionally drained. I can't sleep when I miss the warmth and weight of Adam's body on the bed next to me. I can't concentrate on treatments when I'm biting my lip to keep from crying because I miss Morgan's smile. And I almost can't breathe when I realize there isn't an end in sight yet.

This is so hard and I've never felt so alone.

Disconcerting

So, my nurse today looked ALARMINGLY like film director Tim Burton (see photo below).

I'm not sure what bothered me more, the shocking resemblance or when he told me he couldn't sleep the previous night so he stayed up watching TV and sharing a can of corn with his cat.


Monday, November 16, 2009

November 2009 Newsletter: 3 months

Dear Morgan,


This month I think I should start by telling you how desperately I wanted to have you. My entire life I've been told that I may never be able to have children and that thought was absolutely heartbreaking. I was so excited when I found out I was pregnant, but I wasn't entirely sure this body of mine would be strong enough to provide for you. Sometimes I look at you and still can't believe you're actually here. When you're old enough to read and understand the things I've written, I want you to know how loved you are and what a miracle it is that we have you.

Before you were born I used to lay awake at night trying to imagine what you would look like. Would you have my eyes? Would you have your dad's nose? When you were finally born you were nothing like I imagined--you were so much more! Before seeing you, it was impossible for my mind to conceive the idea that anyone could be SO BEAUTIFUL! My entire life I've heard parents say that they have the cutest kids in the world.  There were times that I wasn't sure whether or not they honestly believed it or if they felt somehow obligated to say it. Now that I'm a parent myself I realize that anytime a parent has ever uttered those words they were said with the purest honesty. Morgan, I sincerely believe that you are the most beautiful person I have ever seen.


In the past month I haven't felt very well (more about this later) and twice you've also come down with a runny nose and an upset tummy. Most sick babies are absolutely miserable to be around and let's face it, you get a bit more fussy and clingy than usual but you're still an angel. You don't understand what's making you feel so yucky, but between your cries of discomfort you're smiling and laughing like, I'm so happy and cute but WHAT IS THAT TERRIBLE FEELING??? I don't mind when you're clingy because cuddling with you has quickly moved to the top of my list of favorite things to do. Right along with smelling the top of your head and nibbling on your chubby cheeks...or pretty much any other part of your body I can get in my mouth. Your little fat rolls are just-oh-so-enticing and sometimes it's very hard to stop myself from gobbling you right up. But I haven't given in and eaten you quite yet. I mean, how awkward would it be when your daddy asked where the baby was to have to admit "I ate her".


You are changing and growing so quickly, it's unbelievable! It seems like you are learning something new every single day. Those near giggles have turned into full belly laughs. Those hands that used to stay balled into fists near your face or stuffed in your mouth are now open and exploring everything they touch. You coo more and more every day and you're really finding your voice. Your daddy and I love to sit and listen to your "stories". But in finding that voice of yours, you've also learned that you can screech. Can we please talk about the screeching? When is that going to stop? It's not quite a squeal of delight nor is it a cry of discomfort, it's just a loud high-pitched scream. The first few times I heard this noise I came rushing to your side to be sure everything was okay. You quickly learned that it grabs my attention and now it's become a game for you. As I leave the room you screech and just wait for me to come back, then you wave your arms and smile when you see me. Since I know this is what you're doing, that you're not really sad or uncomfortable, I could easily just go about my business but the look of pure ecstasy on your face each time I come back to you is more than I can resist.

These past few days have been the hardest days of my life--physically and emotionally. I've been very sick and have had to stay in the hospital far away from you and daddy. My heart aches for you, Morgan. I can't make it through a single minute of my day without missing you--pining for you. I'm no longer whole without you. Your plump little toes, your delicate fingers, your beautiful blue eyes... There isn't a single thing about you that I don't miss. Grandma is taking care of you while I'm away and more than once I've called her in tears. During those phone calls I can hear you crying or cooing in the background and it eases my soul just a little. Then I imagine you laying on your blanket screeching, waiting for me to come back to you...

Morgan, sometimes it may take longer than others, but I will ALWAYS come back to you.

Love,
Mama

Thursday, November 5, 2009

Thinking...

Adam is TOTALLY going to be that dad who sits in the living room cleaning his guns anytime one of his girls has a date.