Moving Rooms

I just heard a little while ago that I am being moved to HTICU. It is a back room with strict visiting hours, but I really don't care. I'm not sure when I will move (sometime this evening). I'm hoping it will be before 7pm (when the night nurse comes on). I'm SO happy!

My nurse today said that she was getting another HTICU patient....which is a little odd. I'm not sure if it is a new patient or if I am swapping with a patient or what. But I'm guessing that Dr. Y knows about the incidences with the nurse from last night. I still have not seen him today. And will be telling him if he doesn't know. My Mom is even wanting to contact a patient representative tomorrow (Monday). So we'll see what happens. I'm just glad to be moving (even if I will be isolated to just that unit and have strict visiting hours). Sometimes they let the visiting hours slide, depending on who is the charge nurse. So we'll see what happens. Thanks for your prayers!

I'm very tired today and have a massive headache. I'll be glad when today is over with! I'll update again tomorrow!

UPDATE: 7:50pm
I have moved rooms...about an hour ago...yay!! A patient did go home, so that's how the room became available. I did tell my doctor about the nursing issues last night and today, and he said he would follow up with it tomorrow. That was about it. No news on when I'm going home....no news on really anything. I'm glad to be on my "home" unit ! I'm hoping to get some sleep tonight, as I didn't sleep at all last night!

Hospital-Day 5: Bored and Fed Up

Well, I've been here 5 days so far! No word on when I'm going home. My guess is still Wednesday, which would be 7 days. I still have not moved to the transplant floor, and are getting really frustrated with some of the nursing care given on this unit. I have had some nurses miss giving a couple of doses of my IV antibiotics, but documenting that they did. I've been paying attention 100% and actually writing down when i get meds and the next time they are due. Recently, there have been some issues with a nurse not giving an antibiotic when it's due or giving it WAY later than it is due, which I just don't understand???? There have also been some common sense things that the nurses are doing or have done wrong (that I've had to correct). I just don't understand. But I know I'm right, because I'm watching what's going on 24/7 (even during the night). I spoke to my doctor yesterday and he said he would talk to the nurse manager on the unit on Monday. However, another mistake by the same nurse was made last night, so there will be more discussing with my doctor when he rounds.

Other than the nursing issues, I am feeling better. I'm still pretty tired, but most of the other symptoms are gone. My O2 sats have been running around 92/93 the last 2 or 3 days which is a little bit concerning to me. I always run around 99 or 100 even when I'm sick. I never drop. So I need to address that issue with my doctor this afternoon as well.

Brandi's aunt brought up Chinese food last night for dinner, which was nice! Hopefully my parents will bring me something good to eat for tonight. Brandi and I did go outside a little bit yesterday to get some fresh air, which was nice. It felt really good! I'm taking advantage of being able to go anywhere I want to in the hospital while on this unit. Because once I'm moved (or if I ever move) to HTICU, we are locked in to the unit and can't go anywhere!

Well....that's about it right now! I'll update again soon!! Please continue to pray for a room to open up on HTICU...the nursing care on this unit is really driving me crazy and I shouldn't have to watch them 24/7!!!

Hospital-Day 3

Well, not much is going on. I'm still off-unit, but should be moving today or tomorrow (hopefully). I am feeling some better compared to Wednesday. I still haven't slept much or felt like eating, but hoping those things will change quickly. My nurse practitioner told me she would give me anything I wanted to help me sleep. So we'll see.

I'm still taking the IV phenegren some for my nausea. I'm taking Lortabs for back and chest pain. I'm getting IV benadryl with my Vanco and actually getting a 2nd dose of benadryl because of it making me itch. So I've had some pretty potent drugs in my system.

The official diagnosis (or what they are telling me) is broncho-pneumonia. I'm still waiting for culture results to come back to see what is growing and what antibiotics i'm sensitive to. My creatnine is still high @ 1.4. They did not do continuous fluids, so I'm trying to drink lots of fluids. As far as I know, everything else is ok.

Dr.Y has been pretty good (although I would still rather deal with someone else). Brandi's dad brought me her extra Mac Computer last night....which I am SO VERY THANKFUL for!

That's about it. Just the usual stuff. No word on when I will go home. I'm guessing I will be here at least 7 days and finish up abx at home, but who knows? I think they are planning on discharging me on inhaled TOBI.

I hope everyone has a great weekend! I will update again soon!! Please continue to pray for a room to open up on the transplant floor and for a speedy recovery! Thanks!

Another Award...

I was given another award from sweet Sarah. The “Attitude of Gratitude” award goes to bloggers whom have made the most of their life situations.

So I nominate the following 5 blogger friends for The “Attitude Of Gratitude”:

M @ A Cure for Lil' Chris (she has such a strong passion and will to raise money for Cystic Fibrosis and has really stepped out! And lil Chris is still so young..it's amazing to see her spreading awareness)

Alicia @ Experiencing Each Moment. A mom to two lovely kids and a wife to an amazing Navy husband!

Kellee @ Our Story (visit her blog to see how she makes the most out of life..too much to write here)!

Kori @ My Life as a CFers Wife.

Angela @ Phoenix's Fight!

You are all inspiring people...not just the ones listed here!

Hospital

Well, the doctor admitted me to the hospital from clinic this morning...UGH! I had actually felt a little better yesterday, and was hoping to escape being admitted. However, this morning/today, I felt so much worse. So I'm glad to be getting some relief. They think it is just a bad infection or bad bronchitis. My xray did show a spot on it, but they aren't sure if it is pneumonia or not. Regardless, they thought it was best to put me in. My chest sounded pretty congested according to the doctors. I was coughing my head off all morning during clinic and most of the day today. I was having a really hard time breathing. I had chest pain, chills, wheezing, etc. I know when I got back to the exam room in clinic, i looked awful. Most of my labs were ok....i'm extremely dehydrated. My creatnine is 1.5 and I'm usually under 1.0. So they are supposed to be pumping me full of fluids (just what I like....NOT!!!) My magnesium was 2.2....WOW!! (and I actually haven't taken any in awhile). My hct was 30, which is great too. My WBC count was 4.1 (a little higher than usual, but not bad). My weight has also dropped pretty significantly. So hopefully once I start feeling better, I can put some pounds back on. They have put me on the same 3 IV abx as the last time I was here since they worked so well: Vancomycin, Tobra, and Fortaz. And I just completed getting all 3 of them!

And once again, our transplant unit is full, but I've been told I should be moved by Friday. Dr. Y is on call at least for the remainder of this week, possibly longer....UGH!! However, he was very sweet and sympathetic towards me today. I didn't see him in clinic, but he rounded late afternoon. He really took me seriously (probably because I looked awful). So hopefully he will be ok this round! At least I have a nurse practitioner to handle things as well.

I had to wait on my bed assignment in the admitting waiting room earlier today. Usually they send me straight to a room from clinic, but one wasn't available yet. It was awful. I was so cold that I had a sheet and blanket covering me up on top of the jacket i was wearing over my shirt. I was shaking, breathing hard, coughing, etc. I think I got so overwhelmed and feeling so bad that I started panicking. I started crying and really feeling like I was going to pass out and throw up. And every time i stood up, i was dizzy. I didn't think I was going to be able to wait on the room to become available. So plans were in the works to find a chair somewhere to go ahead and start meds. But thankfully, my room finally became available, and I arrived in it about 1:30 or so. I immediately layed down on the bed and probably cried for over an hour. This is SO UNLIKE ME....so not sure what was going on...i just felt so bad, was in pain and felt like I couldn't breathe. The nurse practitioner finally came around and got orders put in. I got IV phinigren for my nausea and Lortab for pain. And then it wasn't much longer when I got Benadryl for one of the IV meds. I feel much calmer now...but not great!

So that's all the details for now. I will update again soon. My laptop computer is actually not working, so I'm borrowing Brandi's for tonight. Her dad is bringing a 2nd computer up this weekend for me to use...how sweet! I think I would go insane without a computer up here! On a side note: Brandi got admitted today for her usual CF tune-up, so please keep her in your prayers as well. Overall, I'm pretty frustrated with the whole situation of being sick AGAIN (and 3rd hospitalization this year). But I'm thankful I'm here and able to get immediate relief.

Sorry for the delay in this post! I'm hoping to get some good sleep tonight! Please pray that I will bounce back quickly, and that I can move rooms very soon to our usual transplant floor. I'm currently in W606 for those that usually ask where I am each time I come in. Thanks again for all of your recent comments and prayers!

Award

I was recently given "The True Friendship Award", by Sarah @ "Standing Tall Through Everything". Thanks girl!! Sarah definitely exhibits true friendship via her blog...so go check her out!

I am supposed to nominate 5 blogging buddies whom I believe are true and genuine friends. All of my blogger buddies are true and genuine, but I am going to nominate the following: (most of the nominees are my age and are going through the same exact things in life...so the friendship tends to be more genuine).

Katelyn Elaine

Emily Mulkey

M @ A Cure 4 Lil' Chris

Cara

Brandi

Thanks again Sarah for giving me this award :)

Blocked Followers

I recently blocked several followers from following my blog or having access to it. I'm just being cautious and were a little bit concerned about these particular followers (who were not followers of any of my fellow bloggers). So if you are reading my blog somehow and you were blocked and want to follow my blog, you need to send me an email and tell me why you want to follow and what your connection is.

I'm so glad I finally figured out how to block individual followers...YAY!!

Health Update!

I'm going to clinic tomorrow....so I will update afterwards! I feel about the same. My fever is gone, but I've also been taking Tylenol around the clock! Not sure what's going to happen tomorrow. If my xray is clear, then I'll probably come back home. If it's not, then I'll probably be admitted. Thanks for all of your comments and prayers. The summer months are usually my best months...so not sure why i'm sick right now!

Music Monday-David Cook

For you American Idol Fans...I have chosen David Cook's song: "Permanent"
for this week's Music Monday Post. He sang this at the finale last week in honor of his brother who recently passed away from cancer. You can download this song on iTunes, and all proceeds will benefit the charity David Cook is raising money for (cancer charity). I have just downloaded the version from YouTube, but I do encourage everyone to splurge...pay the $0.99 and give back to this charity in honor of David Cook and his brother. It's a pretty good song too! So I hope you enjoy it!

Sick

Well....I didn't have much luck trying to fight off my cold on my own. I was really trying hard and taking everything I could think of that was over the counter (Tylenol, benadryl, etc.). It mostly originated in my sinuses, so I guess it just made its way into the lungs. I have felt pretty bad since Friday, but was hoping I would get better. This morning I woke up (or rather, I really didn't go to sleep last night), feeling pretty sick. I had a thermometer in my car, so checked my temp and it was 102.6. So my parents made me drive back home from the lake. I just got off the phone with my coordinator, and unfortunately, HTICU(transplant floor) has no beds available. So the doctor put me on an oral abx, and if I don't improve by tomorrow or still have a fever, I'm supposed to call back. Or if I get worse tonight, I'm supposed to call back as well. I'm having chest pain, major SOB, constant cough and constant coughing up junk. I'm guessing I've probably had a fever all weekend, but didn't' check it until this morning. So I'm home from the lake, and just resting. I took one dose of the abx and are going to take Tylenol around the clock. So we'll see how it goes. I'm so frustrated....but feel really sick. So I'm not sure what's going to happen! I'll update again tomorrow (or sooner if needed). My favorite doctor was on call today (not Dr.Y), so I'm thankful for that. And hopefully we will stay on call through tomorrow!

The weather here has been rainy and cloudy! We finally had a fairly sunny and hot day yesterday (Sunday) at the lake, so I was able to lay out for a little while and take a boat ride. It rained all day Friday, and Saturday was overcast and scattered showers all day. Today is actually fairly nice, but I had to come back early. Oh well!

I hope everyone has a great Memorial Day Holiday!

Off to the lake....

I'm leaving for the lake and will be there through Monday evening! I'm excited and are praying for some good sunny weather! I'm sick...which is a bummer..trying to fight it off myself with the little-almost non-existent-immune system I have. I will tentatively be going to clinic next Wednesday if I don't get better over the weekend...with strict instructions to call my coordinator if I get worse before then!

No blogging until I return from the lake (although I do have one scheduled for Monday...hint)!

I hope everyone enjoys their holiday weekend! Be SAFE!

Great Strides Walk Pics!!!

Here are some pictures from our Birmingham Great Strides Walk. This is the walk where I had my own team. I know some of you are confused and think I had a team for other walks...but I only had a team for this walk. I worked/volunteered at the others! And like I said...it was a rainy day, but a successful day!

Our Miracles Team!

"Jam" (yes, that's her name) warming everyone up with some 'crunk fitness'

One of the little boys on my team!

Another CF/transplanter with his wife!

This picture is just to show you the big pavilion we had and we fit about 300 people under it!

One of the families I babysit!

One of our CF/Transplant doctors and family!

Me with one of my former CF docs youngest child!

The Home Depot Kids Corner

The Cheerleaders made a sign!

Me Speaking

Our wet sign and wet tent!!

Part of my team eating...and a good shot of the back of our shirts!

CF Walk Update

Well, it has been VERY VERY Rainy and Nasty this past week and weekend where we live! It rained pretty much the entire time during both of the CF walks this weekend...and it was our 2 biggest walks within our local chapter. I'm SO SO tired of this rain. Despite the weather, the walk on Saturday still had a good turnout of at least 250 people..probably more. Thankfully, the location had a HUGE pavilion that was able to fit most everyone underneath, including entertainment and lunch! The majority of my team showed up, for which I'm extremely thankful. I still have a ways to go to meet my team goal..but are planning on doing everything I can to make it. We had a goal of $185,000 total for this particular walk, and are at about $130 right now...so we have a little ways to go on that too! But I'm sure it will happen! The day was definitely fun. I arrived 3 hours before the walk with the CFF staff to help set-up and stayed until all was cleaned up at the end. I got to do a brief speech at the walk as well!

Yesterday I attended our Montgomery CF Walk...and it was even more nastier than Saturday's! It was at the Montgomery Zoo. Thankfully, we did have tents for the registration area, and then one BIG HUGE TENT inside the Zoo where we were able fit everyone who showed up, tables/chairs, and food. I think about 120-130 people showed up, which was probably about 1/3rd of the people we had signed up for the walk. I was surprised to even see that many show up...because it was definitely muddy and nasty! We are at about $71,000 of our $90,000 goal for this walk. So I have full confidence we will make that overall goal!! I had a good time...despite the rain! I got to meet a lot of new people at this walk, including a mom and family of a friend of mine that past away last year from CF!

I am a little concerned about getting sick, since I've been out in the rain the past 2 days and really overdoing myself as far as helping out this weekend. The wheezing has stopped, and had done so by Saturday afternoon. I'll write more on that later! If I make it through this week without feeling worse or getting sick, then I think I'm out of the woods. So we'll see! I'm supposed to be going to the lake Thursday-Monday to celebrate the Memorial Day holiday!

It sounds like everyone else's CF Walks went pretty well! I'll be posting pictures and more details later this week! I'm pretty exhausted today, and just woke up from an afternoon nap!

Question??

I have a question: Is there a way to remove a follower from you blog?? I don't want to make it public, who I'm talking about, but don't want this blog following mine. Anything I can do?? Thanks!

CF Walk/Health Update

Our local CF Walk is this Saturday, so I've been VERY busy all week with stuff (not only for my team, but for the walk as a whole). I've been at the CF Foundation pretty much all day every day since Tuesday. So I apologize for not blogging much this week. I am also attending another one of our CF Walks in Alabama on Sunday, so I probably will not update until Monday...as I'll be exhausted Sunday night! We are praying for good weather all weekend!

I have not yet met my personal goal, nor my team goal. I am about $700 away from my personal goal (I had to decrease it by $2,000 due to the economy this year). So if any of you would still like to make a donation (I know most of my blogger friends are raising money for their own walks), please feel free to click on the link on the right side of this page. You really are making a difference in the lives of those with CF with your donation and support! We count on individuals like you to fund our research; help improve treatments for CF patients AND find a cure!

A Quick Health Update: I had to discontinue the Bactrim, due to loss of appetite (which is one of the side effects). I noticed my appetite decreasing immediately upon starting the bactrim since clinic about 3 weeks ago. I finally realized that the Bactrim was what was causing the no-appetite (or so we think) late last week. I talked with my coordinator on Monday, and I'm holding it until Sunday. If I can tell a difference, then they will switch me to a different drug, similar, yet not as affective. My coordinator would rather me be on the less-effective drug than not eat (so do I). I can tell a difference for sure...and have already gained a couple of pounds since Monday! Aside from the Bactrim, Tuesday, I started experiencing lots of wheezing and shortness of breath, in addition to some coughing. It has increased significantly since then, and is really getting on my nerves. I have probably slept about 12 hours total the last 5 or 6 days...not good. And last night, even after taking sleep meds, I was up all night wheezing and coughing. I'm concerned, but trying to brush it off until after this weekend. Hopefully it will get better. I'm doing breathing treatments (Xopenex) and my albuterol inhaler every 4 hours. Hopefully the Xopenex will help! (I hate doing the breathing treatments, because they make me SHAKE LIKE CRAZY!!!!!!!!!!) So yes, I don't feel my best, but don't think it's an emergency to call someone. As long as I don't have a fever, I think I'm ok until Monday!

I have the house to myself tonight (my parents are at the lake)...and although I REALLY REALLY want and need to sleep...i would love to have my little own scrapbook slumber party (yes...by myself). I like spreading my scrapbook stuff out all over the room, and since I'm awake most nights anyways...why not scrapbook?? I might try and go to sleep first and see what happens. I do desperately need rest before this weekend. We'll see!

Kellee

Kellee over at Our Story/Confessions of a over~caffeinated housewife has recently had to make her blog private (due to stalker lady who we are all familiar with). She asked me to make a post....because she doesn't want to loose all of you wonderful bloggy friends! So if you are interested in following her blog, please send her an email: Kelleenicolejones@yahoo.com to gain access to her blog! Thanks!

Graduation Pictures

This is our school walking in the auditorium

Walking to my seat!

The schools with their flags raised were the ones participating in this ceremony. They split graduation into two different ceremonies due to the large # of those graduating! Sorry for the guys head in the way!

This is when the honor graduates were recognized! I'm 4 rows up from the back on the left side. You should be able to see me (short and blonde hair)

Walking back to my seat from stage

This picture is of everyone moving their tassels over to the other side!

The end of commencement. The balloons ended up being a little off! I think they were expecting more graduates to show up :) We had bagpipe players play for us before and after the ceremony. It was really good!

---------------------------------------------------------------------------------------------------------------------------------The following pictures were taken afterwards outside the auditorium (or rather arena...graduation was held in our arena):

A proud mama!

Our family of 4!

My grandmother!

My brother!

This was in front of "Blaze" (our school mascot is a blazer...see below). We recently added him to the campus with blazing fire (smoke) coming out. It's actually pretty cool!

--------------------------------------------------------------------------------------------------------------------------------------These next 3 pictures are ones that the Birmingham News Photographer took! I had the hardest time keeping my hat on (i hate one-size fits all caps). So this dean as well as the media relations lady were putting bobby pins in my hair (i think i had at least 5). So my hat was a little awkward/crooked looking the entire ceremony..and i couldn't move or adjust it because it was "bobby-pinned" in...but oh well!

This was a "fake" pose of me moving my tassel. The photographer had to leave before it would actually happen during the ceremony, so he used this picture to capture it. This was the picture used in the newspaper article!

Walking to the arena. This is one of my favorite pictures. Too bad it's copyrighted!

Reading my program, waiting to enter the arena!

It really was a great day! I got the proofs of my professional photos via email yesterday. When I get the actual photo(s), I'll post those as well. I'm pretty happy with the ones my mom took though...they turned out pretty good. The only one that turned out blurry that I'm upset about is the most important one...walking across stage. I gave her a really hard time about it :) But one of the professional photos captured it!