Last Week...

Well last Monday my SIL Stephanie took me back up to Gainesville for an x-ray to see how my little lungies were doing and he ended up scheduling a bronch for that afternoon and I was admitted again! :(

Steph spent the night with me and then headed home the next morning after we woke up. I am so lucky to have a SIL like her...she is ALWAYS there when I need her no matter what!

Unfortunately, we aren't entirely sure what is going on with me. When he does an xray and bronch it looks like pneumonia in the left lung but I have had no fevers at all (knock on wood!) and my biopsy's keep coming back negative for rejection but for some reason I don't think he is happy with those answers and thinks something else is going on! He said infection/rejection can look the same in a bronch so sometimes its hard to tell. So at the moment I am on IV cefipime twice a day and while I was admitted into the hospital I did 3 days of high solumerol IV and now I am on a prednisone tapper. Oh I am also on coumadin for a month (hello bruise city!) because I had a CT scan last week that showed a small blood clot so they are treating me for that as well! I tell yeah if it isn't one thing its another! :(

Easter was great. Dinner with my family was awesome and I am glad I wasn't in the "Get Well Hotel" as one of my friends calls it! I was there for 4 days last week but was able to leave on Friday to join my parents and little sister in Panama City Beach for the weekend to visit my Aunt and Uncle! It was a nice but WAY to short of a trip....next time it will have to be a longer

visit and maybe Danny can go too!

Our little family at Easter!

Me & Danny! :)

Me & Jessie in Panama City Beach!

Speaking of Danny...while I was away my awesome husband checked some things off his Honey-Do list and painted/added chair-rail to the living room and dining room. I am so thankful to have a husband that is handy AND motivated to actually do the projects that I think up in my head! :)

boring living room from when we first moved in....

slowly getting there...

Dining room from when we first moved in...

Now! :)

Well, thats all I got for now...I am on IV's for the rest of the week and have to go to a clinic appointment on May 11th so we will see what he says then. I have a meeting tomorrow for Jen's Kids so we will see how that turns out. The hospital unfortunately hasn't done a darn thing while I was away so we are meeting to decide where to go from here. I am kind of disappointed in them that they dropped the ball so we will see.

Anyway....have a great week everyone!! XoxoX

Half way there...

Well its taken 2 weeks but the other day I FINALLY started to feel better thanks to some 3% saline treatments! Along time ago I used to do 7% hypertonic saline treatments but they would cause me to have horrible bronco-spasms and wheezing so I stopped doing them. With this admission I was finding that my left upper lobe was just not getting the junk out on its own no matter what I did so my doctor suggested I try the 3% to see how well I tolerated it. Luckily it went well and almost instantly I was feeling less sticky in my lobe and I was able to clear the mucous out easier! Have I mentioned that I love my doctor and am thankful he is back?? :)

Yesterday, I had another interview with the newspaper for Jen’s Kids. I think its gonna be a really good article I am just going to have to get used to the fact that they want to take pictures of me with my oxygen on to put in the paper. I know that thats really me but I just hate the fact that I even have to wear it all the time let alone be put in a paper that everyone in the town I grew up in is gonna see. I guess that’s just me being vain but I can’t help how I feel.

I got to go out on pass on Sunday. I went with my SIL and we got pedicures and I got my haircut. It was so nice getting out of the hospital for a little bit and the pedicure was complete bliss! Definitely what the doctor ordered.

I missed Oktoberfest this year which was a huge disappointment but hopefully this time next year I can go and not be on O2!! Let me rephrase that...next year I WILL be going without oxygen!!

Well, I guess that’s all I got for now. Monday is 3 weeks I have been in the hospital but I have strong feeling that I won’t be going home then. Especially since the whole first week I was here was basically a joke thanks to the Dr who shall remain nameless. But we shall see.

Have a good weekend everyone!!!

New Room

Here are some pictures of the first completed room by Jen's Kids!! I am so happy its finally done and I think it turned out wonderful. I LOVE the wall color the most...I think the overall feeling of this room is just warm and cozy and much more inviting unlike the cold rooms from the previous post! So I hope you like it and let me know what you think!! :)

the door/"rain" windows to the hallway

The new pull-out couch/window and the bathroom door

New closet/wall unit/TV

Notice the cool fiberoptic lights on top of the wall unit...they change colors. :)

Old Room

When we started the first room renovations for Jen's Kids, I didn't get before pictures taken. But I did take snapshots with my phone of the room I was in before moving to the new room yesterday afternoon and since all the rooms look the same I figured its the next best thing so you all could see the changes we have made!!

This post I will show the old room decor and then I will post the new room renovations in another post.

the door/windows to the hallway

window to the outside/little bed for parents to sleep on

TV cabinet, sink and closet...in the lower right corner is a table/chairs

looking straight on from the bed

Pretty plain looking I know. This is all the original decor from like 20yrs ago so it definitely needed refreshing! :)

feeling better

Monday afternoon I was re-admitted into the hospital after trying home IV's at home for 2 weeks without much change in the way I felt. I did 10days in patient and two weeks at home and I still didn't feel up to par so I decided to come back in because clearly what I was on wasn't doing the trick! At home I was on Merrem, Fortaz and Amikacin.

On Monday when I got to the hospital my Dr switched my IV abx to Merrem, Cipro and Azactam. Plus I am doing Colistin breathing treatments twice a day.

On Tuesday some of my lab work came back saying that my liver enzymes and my eosinophil levels were high, which he thinks is from the Merrem so he discontinued that all together.

On a cool side note...the first room that Jen's Kids remodeled was finished today so they moved me into it and I am officially the first patient to use it! Its SO nice, I can't wait till they finish all the rooms its such am improvement! :)

Other than that I am just trucking along trying to get better. Oh yeah, my family is coming up here tonight so I can say goodbye to my little brother. Him and my parents are leaving on Saturday to take him up to Ohio for college. I am probably gonna cry cause I am a big fat baby but we are all going to miss him! :(

Bye Jordan I hope you learn lots and I can't wait to see you at Christmas! I miss you already....thank goodness for Skype so at least we can keep in touch that way! Love You!!

2 WHOLE YEARS!!!

Today I hit the 2 year mark on the lung transplant waiting-list!

I have to believe that my time is soon. Unlike so many of my transplant waiting-list friends, I "knock on wood" have never even had a dry-run.

I fully believe that there is a bigger picture plan out there for everyone and I guess my turn hasn't come yet because if it had I wouldn't have ever come up with the idea to start Jen's Kids and that is something that I am very proud of.

Hopefully (I say this every year) 2010 is my year. I am ready to move on to the next phase in my life and I can't do that until the flippin phone rings!!! :)

I guess whenever you are in the mood to say a little prayer or to throw some good vibes out to the universe, please think of me and that I get my call soon. I would very much appreciate it!

One week down...

Yesterday was one week I have been admitted in the hospital and I am feeling great. The best news is that I saw my doctor this morning and I am going home Thursday afternoon! I of course will be going home on one more week of abx but I don't mind. :)

My first 3 days of being in the hospital where rough of course. I had the usual 3 days of fevers and that overall feeling of sluggishness but by day 4 I was feeling much better.

I am on 3 abx this time which seem to be doing the trick. I am also on prednisone which is of course making my sugars all crazy but that's to be expected.

We have some friends who recently got engaged and are having an engagement party on Saturday so I was really hoping to be home. I am tired of missing out on things because I am stuck in the stupid hospital all the time! So when my dr said I could go home on Thursday I was really excited.

Well that's all I got. I know not to exciting but how much could I have to talk about from just sitting in a room for a week? LOL

Oh yeah...I did get to see the first room that they are working on at the hospital and it looks AWESOME. I can't wait till it gets finished and I can get some pictures of it for you guys. Its very cool! :)

Im in the paper today!!

There is an article about Jen's Kids in today's News Press. Here is the link if you wanna read it! :)

Jen's Kids article

Check Presentations

Within the last week I have been to two different check presentations for Jen's Kids.

The first check was from Pelican Landing (a gated housing community.) They took a tour of the hospital in May and then decided they wanted to get involved. Through the amazing members of there community they were able to raise an amazing $27 860. Thanks again for all your support!

Today was the check presentation from the Paul Todd Benefit concert I blogged about a few days ago. I was completely shocked and blown away when they gave me a check for $24,681!! It was truly a great concert put on by the great Paul Todd and his wonderful charity.



You know its funny cause every time I go to an event for Jen's Kids or these check presentations everyone is always saying how great I am for what I am doing for the Children's Hospital but I don't look at it like that at all. I mean yes, I had the idea but it was my wonderful mother who really got the ball rolling in the right direction and all the wonderful people who have donated and the people who will donate that really are making the difference and making my ideas a reality. So for that I am really great full! :)

Last Night

Last night my family and I went to a benefit concert for Jen's Kids and it was great!



Paul Todd charities put on this wonderful concert where half the proceeds go to Jen's Kids and the other half goes to The Harry Chapin Food Bank.

It was supposed to be from 7-9 but he was also taping this concert for TV and I think he said he was going to make a DVD so he planned on singing more songs than usual...well it didn't end till around 10:30! Thank goodness I planned ahead and thought to bring an extra oxygen tank "just in case."

There was a little bit of something for everyone last night but I think my favorite part was when Paul sang with the Chaloosahatchee Stompers. They were 5 older gentleman each playing different instruments Trumpet, Trombone, Clarinet, Tuba and the Banjo. I think my inner redneck girl was itching to come out when they were on stage!! :)

All the performers at the end of the concert

Me and my cousin Kasey

Me and Danny

Me and Mom

My sister Jessie and I

Thank you again to ALL the great people I met last night and to all the generous people who support Jen's Kids and my vision everyday. We really couldn't make my idea a reality without them.

Girls Night Out

Well its been a few days since I blogged anything and its not because I haven't had things to say its just because I was being lazy and not uploading my GNO pics to my computer and I knew I wanted to add this great picture to my post! :)



10 of us girls went to the Melting Pot for dinner last Wednesday night and it was fabulous!! 5 of the girls were my girlfriends from high school and 4 are my friends who I have met since I have been with my husband. So it was a great mixture of new and old and everyone gets along great. I swear I haven't laughed that hard in a LONG time...and im sure the cosmos helped! ;)

I did go to the doctor last week and other than a few crackles I am doing good so that was good to hear.

Today there was a fundraiser for Jen's Kids that I went to with my mom. People bought tickets to have lunch and sit at a table with a local celebrity of there choice. It went really well and I met a lot of great people.

I didn't take any of my own pictures but there was a photographer there and she gave me her card so once I get some pictures from her I will post them!

Tomorrow is St. Patty's day and we are supposed be going out tomorrow night. It all depends on what time Danny gets home from work though so we shall see!

Good Night!! :)

Another great week!

Well, its Saturday again and another great week has past! I have been doing really well health wise lately and its so nice to feel great and be out doing things with family and friends.

Wednesday was my trip up to Gainesville for my tx check-up. I am doing great (which I knew from Dr. Faverio's office last Friday) but I was shocked to see that my weight was up even more than it was last week! I am up to 115 pounds which for me is alot...I usually hang around 105 and thats if im not sick cause it sometimes drops below that to like 101 if I haven't been feeling well. I don't know what I am doing different but hopefully I can keep it up!

Friday, my mom and I had a meeting with the interior designer of the hospital about the stuff she has pulled together for us to look at. I do like the colors she has chosen and I like the architectural design of the rooms but if I am being 100% honest I am not entirely sold on the project as a whole. I just don't see any of my ideas/suggestions that I gave her anywhere and I feel like all she did was give me the exact color palette/fabrics that they already use in other pediatric areas of there other hospitals and I didn't want my project looking like any other peds floor out there. Does that make sense? So we will see what happens.

Last night we went to a comedy show with Curt and Karen. It was ok, I thought the 2nd comic was funnier than the first but apparently the table next to us didn't agree so they proceeded to talk VERY loud through his entire set to the point where he told them to shut the F***up! I thought they were incredibly rude and was annoyed by them...and they weren't even young people they were older retired-ish age people who you would think would have better manners. I mean this is this guys job and I thought he was funny...even if they didn't they shouldn't have ruined it for everyone else! Ok...im done now! :O)

Here is a picture of us from last night:

Interview!!

Here it is...as you can probably tell I was SUPER nervous! I wanted to do the interview without O2 also so I was not only nervous but a little short of breath too. All in all I think it turned out really well. Hope you like it! :)

Hospital Interview

Well the news crew from our local NBC station just left. I can't even begin to describe how completely nerve racking that was! I think it was the most nervous I have ever felt doing and interview for something.

Nancy and Jeff who work at the station did everything they could to make me feel comfortable and I trust that they won't make me look to bad. :-)

Once it airs they will also have a link on their website so I will post it when I get a chance. I am going to be on at 5:30pm tonight on NBC 2 for anyone local who wants to check it out.

Today I also got the chance to meet Jim Nathan who is the President of Lee Memorial Health System which covers all the hospitals in Lee County including HealthPark where the Children's Hospital is located.

He is a very nice man and its obvious that he cares a great deal about things that go on in his hospitals and the quality of care that patients get. The meeting was supposed to be at his office but since I am still in the hospital he came to me and I thought that was very nice considering how busy he is! :)

Oh yeah one more thing....just wanted to give a shout out to my wonderful friend/nurse Jackie who I made be on the news too this afternoon even though she was kicking and screaming the whole time before hand...YOU DID GREAT!! I love all you guys! :)

Back in the joint

Well I am back in the hospital AGAIN! When I went in to see my DR on Friday to get signed up for the Azli medicine I told him that I had felt a little tired the last few days and we both agreed to admit me now before it got worse and I was banging down the door trying to get in! So Tuesday I was admitted.

Now of course anybody who knows me or has read this blog while I was in the hospital before knows that the first couple of days (no matter how well I try to be pro-active about coming in) I am in the hospital I get very high fevers and feel 10x worse than when I was admitted before I start to feel better. This admission has been no different...I haven't had any fevers yet today but the day isn't over so I am not holding breath!

With the fevers come chills, then when the fever breaks cause of the motrin I get the sweats and going back and forth with the temp does nothing to help my breathing and I feel very short of breath and then the O2 has to go up.

This brings me to the last couple of days and my nurse. She is a very nice girl and I like her just fine, its just that I feel that she barely comes in here to check on me and I am really not feeling good and when she does come in its like she doesn't get just how not feeling good I am! I don't know I think I am being a little to sensitive because I don't feel good and people tend to get on my nerves a little easier when I am sick but dang people how hard is it to check on your patient to see if she is still breathing when she is on like 6 liters of oxygen!

OK now that that is done on to some good news. I had a meeting scheduled for yesterday afternoon with the Architect and Interior Designer of the hospital but since I was in the hospital the came to me! We went over some of my ideas (which they liked) and they are gonna work on getting everything set up and we are going to meet again in a month to see what they have come up with. Since we obviously can't close the whole unit we can only complete two rooms at a time until the whole project is done but thats ok. I am SO excited and dont worry I will be documenting everything along the way! :)

Have a wonderful weekend and think good thoughts for me so I can start feeling better and go home to my hubby and puppy!!

We made the paper!!

Here is the link so you guys can check out the article!

Naples Daily News

On January 27th we have to go back to Healthpark (were the Childrens Hospital is located) cause now our local ABC and NBC news wants to do a story! YIKES!!

Friday

So the check presentation was yesterday at the hospital for Jenn's Kids and it went great!

Me, my mom and Vince (blue shirt) presenting the check to the hospital

my mom, me, some people from the hospital and some of my moms wonderful Rotary friends!

Once the check presentation was over it was time to do my interview for the "mini commercial." It was excruciating in the fact that I hate being on camera answering questions about myself and talking about my CF...but the videographer was awesome and he made it as easy as possible for me! I can't wait to see the finished product and hopefully I don't sound to much like an idiot. Hopefully when its done I can get a copy and upload it to blogger so you guys can check it out too!

We don't really have to much planned for the rest of the weekend. Its raining right now, I want to go to the beach tomorrow so I am hoping its nice out. Have a great weekend everyone! :)

TX Check-Up

Yesterday was my check-up in Gainesville and as I predicted I did great!

I weighed in at 114lbs (which I think is up from 3 months ago when I was there but I forgot to ask what I was last) my six minute walk went great and my FEV1 went up by one percentage point! I know that's not really a big difference but the fact that it didn't go down is good in my book.

So since nothing has really changed I have my next appointment set for 3 months from now. I honestly believe that the fact that I am wearing my oxygen more and in turn I am walking and getting around WAY better than I have in a long time is what is making me feel better. I have lots of energy and I am out of my house enjoying life with family and friends again. Its great!

Tomorrow is my "commercial" for Jen's kids at the hospital along with us presenting the first $30,000 to the hospital to get started on stuff. I am super excited to present the check but not really looking forward to being in the video...my mom is kind of making me do that part! You know with it being "my vision" she says I need to do it...so I am. I just hate being on camera! :(

Next Friday I finally have an appointment with Dr. Faverio to sign all the paper work so that I can have the inhaled Azli. I am really looking forward to starting it and I am hoping it will be beneficial.

I am going to bring my camera tomorrow so hopefully I can get some pictures to post tomorrow night.

Good Night.

Need some ideas!!!

OK so on Friday we are shooting a "mini commercial" type thing at the hospital for Jen's Kids. Its gonna show some of the damage they have and there are also some CF kids who are admitted right now who might also be in the video if they want to be and whatever else they decide to shoot.

My job is to come up with 4 songs to play while the video is in progress. I can pick whatever I want I just need to have it by Friday.

I am having a little bit of trouble deciding on what to do. I was kind of thinking of going with a theme about going home/making the peds floor like some kids "home away from home." With that in mind some of the songs I have thought of so far are as follows:

Carrie Underwoods version of Motley Crue's-Home Sweet Home
Bon Jovi's-Who says you can't go home
Daughtry's-Home

Check them out on Youtube and let me know what you think...or if you have any better ideas/suggestions I will take those too!!!

Thanks guys!! :)

It's been awhile

Hello to all my blog friends! It feels like I haven't written anything on here in forever and its only been a week.

Last Thursday, I went to my mom's Rotary Club meeting with her. They did the first ever Jen's Kids presentation on there own club as practice before going around to all the other clubs in the area to try and get donations for the foundation. My mom's club voted that same day and decided that they wanted to contribute $30,000 to Jen's Kids!! I am so excited to get started!

The weekend was pretty good. Friday night Danny's brother and his wife and kids were here and we ordered pizza for dinner and then spent the rest of the night playing Wii. It was SO funny...I never played before I always just watched but I played this time and had a blast! Danny's brother who is 28 (29 on Saturday) did the Wii fitness thing where it estimates how old you are by how well you can do tennis, baseball and bowling....well he was a 63!! LOL we thought that was funny.

Saturday, Danny worked so I read Breaking Dawn most of the day and then Saturday night Me, Danny , our friends Curt and Karen, and Danny's brother Sean and his wife Tiffany went to Sakura for dinner. That is our favorite Japaneese restaurant in our town. Everybody there knows us because we go there so often. We LOVE it there! After dinner, we all went to the movies and saw The Hangover. It was hilarious...if you want a good laugh the entire time kind of movie go see it. Its from the director of Old School so we knew it was going to be funny!

Sunday Danny worked again (story of my life) so I finished up Breaking Dawn. I am happy I finished all the books but I am sad the story is over :( I could read about Bella and Edward Forever! <3

Yesterday I babysat my nieces. It was supposed to only be for a couple of hours but ended up being 4! Trying to keep a 4 and 2 year old entertained is not easy. Luckily they brought lots of toys and movies with them. Unfortuantly whenever the girls are over I have to put Brodie in his cage...he isn't used to little people and I don't trust him around them!

Well, I caught you all up....its not to exciting but hey we have fun! Have a great rest of the week ya'll! :)