It's official

Turns out that I didn't have to stay in the ICU...it was just the step-down unit, which for those of you who don't know, it has all the monitoring of the ICU, but I'm still on the regular peds unit. 

While I was sleeping the alarm started going off because my sats had dropped low. I'm not exactly sure of what the percent was, but when I woke up from the alarm going off, it said 88%. Last night I had fallen asleep without putting my oxygen on and when a nurse came in to check my O2 it said 86% which is no bueno. My number doesn't even compare to a lot of others, but still, they say anything under 90% can start to cause damage. 

So yeah, it's official now. I'm getting oxygen at home. 

Like I said in my last post, I was expecting to be upset when (and if) the time came, but I'm not. 

I guess it really feels like more of a comfort. When I start to get sick and don't necessarily feel like I need to be in the hospital, my O2 will still drop and I have to be admitted because of that. I'm hoping that having oxygen at home will help prevent some hospitalizations. I mean, I can do everything else at home..IV's, treatments, pills. The only thing that's different between coming in the hospital and doing home IVs is when I'm here, I'm forced to rest and there's oxygen. I'm not the type of person who is constantly on the run. I like being at home and spending time with my family..a lot. Buutt, I do see friends and will go out to lunch or go to the gas station or Wal*Mart or run errands with my mom...adding all of that up when I'm sick can really drain my body, and when I'm home,  I don't force myself to rest..I should, but I don't.

I have no idea on when I'm coming home. I'm guessing that I'm going to stay over the weekend and redo PFT's on Monday and then go home the following day, but who knows. It's all up in the air right now. 

A student nurse just came in and is going to do an assessment, so I'm out of here for now.

Till next time, 

Alexandria

The monitor that I was hooked up to

My brother who is, believe it or not, 6 years younger than me

Depending on how tonight goes..

Update: 

My sats were running about 91/92% during the day until about Saturday I believe it was. They're now running at 96% during the day :D. At night though, my sats are in the low 90's which is different because when my sats are great during the night, they're good at night. I know that everyone's sats drop at night, but mine are usually above 94% when I'm better. Sooooo, I'm staying in the ICU overnight and we're going to do an all night pulse ox to see just how low they're dropping when I'm in my REM stage of sleep. If they're below 90% then I'll be getting oxygen at home for the night. I had PFT's yesterday and they were 42%, which is another reason why we think I'll need night O2. When I left the hospital last time, I was at 37% PFTs, but my sats were running at 96 during the day AND night. 

I had always felt like I would be disappointed when (and if) the time came for me to need continuous night oxygen, but I surprisingly feel okay with it. Maybe it's just because we aren't officially sure if I'll be getting it, depending on how tonight goes. 

My weight is up to 106, PFT's are up a little, and I'm feeling better, so we're on the right track. Dr. Homnick wants to keep me here probably for another week. Want to know something? The only reason I'm incredibly upset with that is because it's fair week in my town and I want some dang fair food!!! Elephant ears, fries, cheese on a stick, and the glorious raspberry lemonade...I'm torturing myself just typing all of that. I don't want to go to the fair and hang out because it's a pool of nasty, smelly, germs..just give me the food. I'm such a fatty at heart. Maybe it's a good thing that I have CF or else I'd probably be incredibly obese. Okay, obviously I'm kidding...it's NOT a good thing, although good things have come from it :). A blessing in disguise as some would say. 

Hannah got admitted yesterday with PFTs of 47% and fevers of almost 102. Her PFT's last time she went to clinic were 61%, so yeah, that's a big drop. I know that she'll recover and get out of here in no time though :). She's one tough cookie. 

I need to pee right now, but I'm hooked up to my IV pole and really don't feel like unwrapping it amongst all of the other nebulizer and oxygen tubes and then untangling the plug so I can unplug it...is that bad? Yeah, it is. It probably wouldn't hurt to take a shower either...just saying. 

I bought a shirt yesterday that I'm super excited to get from this store: http://rockcf.storenvy.com/. It's the one that says heather. I know it may not look like anything special to some, but it has a lot of meaning, to me at least. 

I'm going to go and order some yummy hospital food now.

Bye bye! 

Behold, the lovely booth of fun!!! 

Actually, it's where I do my PFT's.

Nonsense and jibber jabber

I'm here. At my second home. 

Once again. 

Yeup, I didn't improve through-out the week. I basically felt the same except over the weekend. On Saturday I woke up with a 101 fever that kept gradually inclining despite me taking Tylenol every 6 hours, right on the dot. It didn't start to go away until about 11 that night. I was coughing a ton more which led to me feeling even more exhausted. It also caused severe pain in my chest/lungs. I walked around my house all day wrapped up in a blanket complaining about how crappy I felt.  Surprisingly on Sunday though, I felt a lot better, more than likely because I had no fever. I had packed my bags that night knowing that I'd be going in the next day still.

PFTs were pretty much the exact same as the week before, which is better than worse. Weight was down 3 pounds, O2 was 91%, and I was running a slight fever. The doctor came in and said, "Well, your numbers are down and you're not feeling well, so let's put you on some IV's. I'm not even going to try Orals since those never seem to work. We want to stop this before it gets worse."

I then waited an hour and a half for a room, drove to the hospital, signed myself in, got situated, saw about 38207 residents, nurses, and respiratory therapists, did vitals, unpacked, got accessed (took only one try!) and hooked up and I was ready to go..well, by go, I mean lay in bed, receive medications, and hopefully get fat! My weight=no good. I also needed to put some oxygen on right when I was going to bed because my numbers dropped lower and won't stay up.

Turns out that my potassium levels were low, that's a first. I took some potassium pills and received a huge bag of it via IV fluids through-out the night and they rechecked it (3 am blood draw...wtefff) and now it's fine :). One step closer towards better health!! 

I had a complete mental break down yesterday out of nowhere. Usually when I know that I'm gonna be  going in the hospital, I don't even think about it. It's more of a, "at least I'll start feeling better; It's for the best" kind of deal. Well, I was sitting here in my gloomy hospital room and just started bawling. I kept telling myself that I couldn't keep doing this anymore over and over again. Luckily, my stepdad was here and he jumped right up and wrapped his arms around me and said, "Sweetheart, you can do it. You ARE doing it, you have been for 18 years. If anyone can do it, you can. You're so strong. Not a day goes by that I don't think of something happening to you. It hurts, but it's reality, but I also know that you would never give up. If you were to ever give up, you would've done it by now." I started to calm down and began to feel a lot better. I guess I tend to keep a lot of my feeling bottled up. I mean heck, exactly a month ago my lungs were functioning at 18%, I had a partial collapsed lung, and was on continuous oxygen for the longest time yet for me, and I STILL didn't cry or feel upset. In fact, I was laughing on most days. No. I WAS laughing and staying positive everyday. 

Okay, enough of all of that. 

Last uhmm Wednesday I believe it was, I had to drive my grandpa to the hospital because he was having severe pain in his stomach. Turns out he had a bunch of stones in his gallbladder and he needed to get it taken out. He's fine now and back at home. I was driving home from dropping him off and my car started to sound really weird. I have terrible anxiety about things and that is one of them. After a few seconds my car began to sound like it was ripping apart and as I was trying to find a place to pull over, the car wouldn't accelerate at all and as I was getting off the road, it just shut off, luckily right after I made it over. But yeah, my car is officially done. D. O. N. E. done. 

I also began filing for disability. I spent about almost 2 hours filling out stuff online. It said that it can take up to 120 days to hear something back, sometimes less, sometimes more. I'm hoping it's less...obviously. Once, and if, I start getting disability, I'll be able to get a car. 

I think I'm done for now. Thank you to everyone who managed to read through all of my nonsense and jibber jabber. 

I will leave you with pictures for now. 

R.I.P. :( 

The lighting was really off in this picture, but this is from this morning. 

...barely

No hospital admission today....barely.

My weight was up a pound to 107...great news! I was worried that I had lost weight because I haven't had a good appetite at all recently. My O2 was 95. 

PFTs (lung functions) were down from 41% to 37%, 35%, and 31%. 

I know it's not much of a drop bbuuuut....it has only been 3 weeks since I've been discharged and only one week since I've stopped IV's. I knew my numbers weren't going to be too great beings I haven't been feeling well so I'm not surprised..but I am disappointed. 

The doctor didn't want to admit me because I just stopped a full course of IV's and since there isn't much of a leeway between antibiotics we really need to make sure that I don't become resistant to the ones that are available. 

I'm going back in a week and if I'm not better then I'm probably getting admitted. 

  

De-accessed!!

I am (once again) officially de-accessed!! 

Now, that doesn't entirely mean that I'm better...because I'm not. 

Better from when I was admitted last..yes, but not back to baseline. 

I was finally able to take a normal shower for the first time in uhhmmm..let's see..32 days!! I honestly didn't even think that it was that long. 

I go back to the clinic this coming up Monday so we'll see how everything looks and then go from there.

In other news, I dropped out of my math class today. The professor said that if any students miss a class they automatically don't get any credit for anything that was done that day, including test's and quizzes ANDD there are no exceptions...even if you let her know that you'll be gone. We were doing mini quizzes everyday and there was HW assigned at the end of every class period. I had talked to her about me missing numerous days due to health reasons and she just said that I need to try and not miss as much as possible and if I do, well, I miss all the points. Sooooo knowing that my health isn't in the best condition at the moment, and that I'd probably be going in the hospital soon, I decided to drop-out...or as my counselor said, "postpone it." I don't want to be stressed out over school issues when they can be resolved ahead of time and especially when I need to be focusing on my health. There's a certain period called the "drop-period" which is when you can drop out of any classes and it won't count against you, your GPA, or your financial aid. It will pretty much be as if I had never signed up for that class. Instead of my math, I am now taking both sociology and some amateur typing class online. We wanted to make sure that I still had the same amount of credits so I could receive the same amount of financial aid back...which might I add, is going to be quite a bit :). I had been debating on whether or not I was going to drop-out. A big part of me felt as if I was being held back by my CF. I wanted college to be different. My WHOLE entire high school career was being blind-sided by my CF and I didn't want that anymore, but the more I began to really think about it, the more I realized that it was for the best. It also doesn't necessarily have to mean that I'm being held back either. I mean, I'm still taking college classes, right? I just need to be positive and that's what I'm going to be. 

On a side note-- I have this candle lit in my room and I believe it's called pumpkin spice....It. Smells. Phenomenal! Definitely something that I could fall asleep to every night ^_^. 

No more!! 

I wonder how many of these I've pulled out? 

Random picture of me doing a treatment earlier.

I cut myself opening up a Cayston vial. -_- 

So much pain.

So much pain.

Chest,

lungs,

body,

head,

everything. 

My eyes burn even with unlimited hours of sleep.

My head spins with every movement.

My chest shoots pain with every cough.

My lungs feel tighter with every breath.

Another hospitalization in the near future? 

New baseline?

Today sucked. 

The VERY instant I woke up, I had a terrible migraine. It's 11:00 PM and it's still there. 

I then started feeling incredibly nauseous. I forced myself to eat breakfast and right after I finished I started throwing up. I took a nap from about 11:30-4:00. After my nap my kidney starting aching which just made everything worse. On top of all of that, my whole body feels entirely drained. Even talking made me winded.

Me and my mom usual have these moments where we'll just both stare at each other. We don't say anything, we just look. We both say that we can read each others minds. My mom knows that I haven't been feeling well at all and we had another one of our "moments" earlier. After we looked at each other she just said, "what is going on with you?" I knew exactly what she was talking about. For the past year I would end up starting to feel sick even a couple weeks after being discharged from the hospital, but this is different. I honestly feel like I could use another admission. I'm still on home IV's and it just doesn't feel like they're working at all. I didn't say anything for a bit and then I said, "I feel like I'm falling apart." I almost started crying and my mom said, "don't say that." I'm really glad that my mom is someone who I can be completely honest with. I'm also glad that she can tell when I'm not feeling well, and she won't always have to question me with, "how are you feeling?" 

I guess I haven't necessarily felt all that great ever since coming home from the hospital. I'll have good days, and then instantly I'll feel like crap. It seems as if I'm getting hit with everything. Pneumonia, cold, strep, sinuses, ear infection, the flu. I don't know, this is all starting to make me feel more upset the longer it lasts.

On a brighter note, my mom made an AMAZING dinner...as always. We had chicken, mashed potatoes, gravy, green bean, casserole, and biscuits. IT. WAS. BOMB! 

Yesterday was pretty enjoyable as well. I had lunch with Kim, my "uncle" Bill, their mom, Kims husband, and my best friend Kayla. Later that night we had a bonfire at my house with my family and quite a few friends. All together there was about 16 people I believe. It wasn't anything too big, but it was still fun. Oooh, and the night before me, my brother, and our best friend got a BUNCCHH of candy from walmart and pigged out and just talked. 

I forgot to update about my appointment on the 27th. My weight was 106, which was down from when I left the hospital by a few pounds and my lung functions were 41%. I was thoroughly disappointed when I saw the numbers. It had been 3 full weeks of IV antibiotics and a week after being discharged and they were still  that low. As I've said before, I'm normally around 48-51% at my discharge appointment. Even that 7% makes a HUGE difference. I keep thinking to myself, "What if this is my new baseline?" I know I can't afford to think like that, but it's kind of hard not too. I am exceptionally grateful that my numbers are even at 40% beings how I've been, and could be, a lot worse, but I'm still kind of upset. So yeah, I continued doing home IVs and was told to come back in two weeks. It would've been a week, but that would have been labor day. 

I also started classes on the 27th. My schedule is really easy.

Monday, Wednesday: FYS(first year seminar)- 5:00-5:56, Math-6-7:58 on campus and then I have Health and English online, which I can log into whenever.  I talked to my professors about my CF and missing classes. The FYS teacher seemed really concerned and caring and said she'd do whatever to work with me, whereas the math teacher didn't say anything except, "just let me know when you'll be gone." I haven't been loaded with a lot of HW yet, I had to write a paper for my FYS class which I was really excited about. It wasn't even anything that I should have been excited about, but that just proves how much I love writing. The paper was just and essay where you had to write about yourself, what you expected to learn from the class, and what you wanted to learn. 

More and more people have been reading and sharing my blog. I know I didn't start it that long ago, but I REALLY want to get the word out about it. I love hearing people say that they've read it, and most importantly, that it has inspired them. It's such a miraculous feeling. I really want to know how many people are ACTUALLY reading my stuff though. So if anyone read through all of this, would you leave a comment saying something so I can get a good idea of how many people actually do? That'd be great :)

Oooh wow...I didn't expect to type this much. I feel like all of that was really unorganized and not really wrote out very well. I took a pain pill about an hour ago and it makes my mind really foggy so I kind of just typed without thinking much. But, I needed an update so I don't really care. I'm struggling to keep my eyes open at the moment which is a sign that I need to go to bed!! 

Goodnight everyone. 

Sweet dreams. 

But first, here's some random pictures..

When I was going down to PFTs the day before discharge. 

Getting ready to head home from the hospital.

I got a new haircut and some red put in. 

I love just being outside while listening to the sounds. 

My dinner :)

This is me right now, getting ready to sleep the night away.