The Joys of having CF

The Joys of having CF

Tuesday, May 31, 2011

PICC Picture

Okay, so here is the picture I've been promising for ohh, i don't know--almost 2 weeks. Yes i've been slacking. This is the FIRST time ever i've had a PICC line without stitches. It's very different, but it's a new experience :) Well just a quick update, i do feel better, i go back to the doctor Friday and we'll go from there. So far i've been on IV antibiotics for 2 weeks and 2 days. Loving my PICC. :) Soo, anyways I will try to blog more from now on, things have just been crazy around here--in a good way :) I hope everyone had a great Memorial Day and honored those who have fought for our country and are serving our country to make it a better place. I hope everyone remembers Freedom isn't Free!!! ~God Bless

Wednesday, May 25, 2011

1 week since I got my PICC line's been one week since I got my PICC line. I apologize I don't have a picture uploaded yet. I will soon...PROMISE! So I also apologize for not posting for a while. 7 days to be exact. Things have been pretty crazy around here, getting into the new routine of the new meds I was put on. My new schedule is:

6:00 a.m.--1 IV med Ceftaz(mom hooks up that one)

10:00 a.m.ish--Eat breakfast, take vitamin, vitamin D, omeprazole, bactrum, enzymes, advair, flonase, VEST, inhaled albuteral, inhaled pulmozime, inhaled hypertonic saline.

11:00 a.m.ish--Try to start school by then or sooner :)

2:00 p.m.--1 IV med Ceftaz, Bactrum

3-4 p.m.--somewhere between there I do VEST, inhaled albuteral, inhaled hypertonic saline.

8:30 p.m.--1 IV med Levaquin, Bactrum, VEST(try to start around this time, sometimes I do, other times I don't)

10:00 p.m.--1 IV med Ceftaz.

So that is my new routine, probably for another week or so. I go to the doctor next week for a follow up, so I will post an update on that, and I will try to post before that. And I promise a picture of my PICC line. Love you all!! ~God Bless

Wednesday, May 18, 2011

Hospital Day 4-Being discharges???

So today(Wednesday) makes Day 4 in the hospital. Today the plan got changed quite a bit. They(the dr, and residents) decided that because I was making good progress with the IV antibiotics, that we should continue them for 1+ weeks. So that meant today I got a PICC line(will post pictures later). So, at 2:30 today I was taken down for my PICC line. It went GREAT!!! no problems, and everything happend on the first try. and this is the FIRST TIME EVER that I DON'T have stitches with my PICC line. Instead they used some kind of clamp. I am very happy and impressed. Sooo with all that said, i'm starting to feel better, no pain, I am GOING HOME tomorrow(Thursday). Woohoo!!! So this will probably be my last blog post from the hospital. For updates; check my fb accout, as I should post some. I will post pictures when I'm able to of my PICC. I am very impressed with this hospital stay because with my first IV, my 2 blood draws, and my PICC everything happend on the first try for everything!! woohoo. Will update later. Thanks for all the texts, and messages. It means a lot. Love you all. ~God Bless

Monday, May 16, 2011

Update: Day 2

Well it's been a full 2 days here in the hospital. I DON'T have pnemonia. I do still have stenotrophamonous(spelling?) and I have psudemonas(it'd been gone for probably 1+ years). BUT, they think I may have a lung fungus. It's sorta like "Farmers Lung"(for more info look it up). It's common in Cystic Fibrosis patients. No big deal, just something else to treatk. I have blood work in the morning that will test me for the fungus. That will determin our plan. So, i'm waiting for my bedtime blood sugar test and then probably to bed for me. It's been a long day--BUT I was able to have an Iced Caramel Machiato :) Have a great night! Love you all.
~God Bless

Sunday, May 15, 2011

Hospital Update & Pictures :)

Hey Everyone, just wanted to do a quick update for everyone, and share some pictures. I'm doing okay, still don't have that good of an appetite, on 2 strong IV antibiotics, and a pain med for VEST(because of the chest pain i've been having when i try to take deep breathes on VEST). i had a repeat X-Ray yesterday, nothing new, nothing gone away. I have a great IV. The new hospital is amazing!(see below for pictures). I'm getting my blood sugar checked before I eat because when i'm sick I tend to sometimes get high blood sugars. Will try to update more often, either on here or FB. Love you all!! Thanks so much for the text messages. It makes my day. Love you all so much, thanks for reading, and staying in touch. In honor of CF awarness month, and now that i'm in the hospital what better awarness, right? Have a great day!!! ~God Bless

Here are some pictures. Enjoy!!! This room is very very huge! Larger than most hospital rooms. The keyboard is so if I don't want to watch TV anymore, I can use the keyboard with the TV and use the TV as my computer screen. Talk about FB on steroids :) and another cool feature is that i have these cool neon lights on the ceiling and i can choose from 9 colors to make it, and the curtons are electric, so you have to push a button to get them to go up, or down. Definetly having that feature in my future house :) well i'm off to take a nap. Update soon. Love ya! ~God Bess

Friday, May 13, 2011

Todays The Day....

So today(Friday) was the day that determined what was going to happen. If I was going into the hospital, or if I was feeling better. Well...because i'm on Cipro instead of Levaquin, it takes longer to kick in, so i'm still home--not any better, and still feeling really crummy...more so then yesterday. It's harder to take deep breathes, and my appetite is horrible. For those of you who know me know I would eat all day long if I was allowed to, the last few days I eat maybe 1 or 2 times a day. That's it, mostly so I don't get an upset stomach from meds. It's not that the food doesn't sit right, it does, I just become NOT hungry at all!! So we're waiting to see what's going to happen. Keep checking my FB account, the group "The Joys of Having CF", or here.
So, we know who's on call this weekend, and we are supposed to call tomorrow and let them know what's going on. They have noted in my chart "may need to be admitted". Will update soon! Thanks for all the messages, and your thoughts and prayers, it means a lot. Love you all. ~God Bless

Thursday, May 12, 2011

Update: 2 days.....

Okay, so update from yesterdays appointment. We got to the new clinic(love it), and did PFT's. FEV1 was 93%. Not the worst, but definetly not my best. Then did X-Ray(when you get so many x-rays you can start reading them yourself) sure enough about a fist size spot of pnemonia/mucas. The dr. said it's either pnemonia or a big mucas plug-i consider them the same thing. So she perscribes Levequin, i didn't remember till we got home that insurance doesn't/and hasn't for a while cover it, and for 4 pills it's a little more that $250-for 4 pills. So we call her back, and today she called in Cipro. She's not very happy that I'm not getting Levequin becasue Levequin is a very fast working antibiotic. So we're supposed to call back tomorrow, and if no change at all then we're probably looking at a hospital stay. Which is what mom and I were expecting. So, I will keep everyone posted, if I end up going into the hospital I will try to do a blog update, if their internet has blogspot blocked then check my facebook account, or join/like the group "The Joys of having CF", and I will try to update. I will definetly try to do a blog update tomorrow and let everyone know what's going on. Thanks for all the well wishes. It means a lot. If we end up going to the hospital, it's no big deal :) just one bump in the road of many to come. We've gotten through so many, we will get through this one with smiles and laughter and positive attitudes, as well as the next ones. Love you all!!! ~God Bless

Tuesday, May 10, 2011

Just A Bump In The Road

Okay, so I hit another bump in the road about a month ago(thankfully after my Make~A~Wish trip). I'm 99.98% positive I have pnemonia-especially in my upper left lobe. *sigh* BUT that's okay. Just because I hit another bump in the road doesn't mean it's a bad thing. I was on my 28 day cycle of Tobi, so I did it a little longer than 28 days. Then I did a 2 week dose of Bactrum, and upped my VEST to 3x a day when possible. of this very moment. Not any better-if I must say so myself I think maybe a little worse. So I go in for my normal every 3 month visit tomorrow(Wednesday), and we already called ahead, they ordered a X-ray to be done, and said bring a bag just in case-and that they won't order a bed yet. So, if the X-ray looks bad(which by how I feel i'm sure it won't look to pleasent) and if PFT's are down(which by the way I feel i'm thinking they won't be the greatest) I'm probably looking at a 1-2 week visit to my new! hospital/clinic(sidenote-my clinic/hospital that i usually go to, joined with another hospital to make one big university/clinic/hospital--no big deal very exciting stuff) that just opened today. So instead of Fairview University Medical Center, I will not be going to University of Minnesota Amplatz Children's Hospital. Isn't that a long name. I was on their website today, and I clicked on the Cystic Fibrosis page, and they have the highest rated lung function for CFers ages 6-17 in the nation!!! I am so impressed and very happy to be going there.
So keep me in your thoughts and prayers, and whatever shakes out shakes out. No big deal. Just all part of the life of having CF, we go to the doctor, sometimes the hospital for a week(s) and then we just continue to live our normal day to day life. Honestly it has become a routine for me.
So what's a post w/o pictures: here's what my hospitals looks like that I go to and have gone to, and just a cute picture just because :)

This is Fairview(where I used to go to,
and will go back to when I'm an adult).

This is my new hospital that i now go to
the clinic is somewhere else but this is the
new addition and the hospital-the rooms
look huge from the pictures, and are very
cool, and i believe that is all glass. And below
is of the front enterance-different view.

And last but not least, a picture of my baby, who just got a haircut last week and looks like this again :) If I get admitted I will miss him like crazy! He is the light of my life. I just love him so stinkin much! I mean who can't love this face?

I will keep everyone posted. Have a great day. ~God Bless

Saturday, May 7, 2011

Happy Mothers Day

I just want to say Happy Mothers Day to all you wonderful mothers out there. But, I want to say a very special Happy Mothers Day to my very special mommy :) She is always there for me, she is always there when I am sick, she stays with me in the Hospital, she listens when I need someone to talk to, we laugh together, dream together, disagree together(sometimes more than we should), we have much fun together, and we live life together while making memories. Sure we may have out disagreements sometimes more than we should, but hey-we're human, and we are almost the EXACT same personality-so they clash, but in the end we forgive each other or just let the silly arguments go to rest, and all in all we love each other. I love my mom more than she will ever know. She is my friend, my mom, my home nurse :) but more importantly she is my hero, and I thank her very much for everything she does for me. I love with the bottom of my heart. Forever and Always, she will always be my mommy :) Happy Mothers Day Mom. I love you with all my heart!

p.s. this picture is 2 years old. I had just came out of the hospital(notice the PICC cover) :)

Sunday, May 1, 2011

CF Awarness

May is Cystic Fibrosis awarness month. The official "color" for CF is purple. So in honor of CF awarness I decided to change my profile picture on FB to a purple rose. This is the month we honor all those with CF who have passed away, have had lung transplants, and are still thriving, and still alive :) hehe! CF awarness is such a special place for me. I love honoring those who now "Breathe Easy", and have lost their battle with CF. We have lost such wonderful beautiful people. I pray for them and their family's each and everyday. Those who have had transplants, I pray for them every day, and am so thankful that they were able to have a second chance at living out their wonderful life, living out their dreams, leaving their legacy!!!!

So this month, if you find it in your hearts, keep CF Awarness in your prayers. <3 <3 <3 you all!!!