Hellooooo ElectroFlo 5000.

Okay, Okay. So now that I'm done with all of the girly griping, sorry, I digress. Let's move on to more important things....Like airway clearance. Yaaaaay!

I have been hearing about percussors and flutters and acapella since my debut on the scene of the online CF community roughly a year ago. (give or take a week or two).  As time has gone by I have increasingly questioned the efficacy of The Vest. Dont get me wrong, we still use it religiously, but its just one of those things that you wonder about. It never elicits a cough, how much can it really be moving?

So with this in mind and a couple of references to this device by some others, we ordered the ElectroFlo 5000. Its a percussor. Its supposed to be closer to manual CPT than The Vest. Its supposed to be amazing. We shall see.

The ordering process was super easy and the people at MedSystems Inc were very nice. I was on and off of the phone in a matter of 10 minutes, max. This is quite possibly because we are paying for this piece of machinery out of pocket. I think that if our insurance had covered it, it may have been a more involved process. The total cost is $2750 and we have 30 days to decide whether its something that is going to be helpful or useful for Natalie.

Quite frankly, I don't care about the money. I care whether or not this thing is going to help. It supposedly allows for a more focused therapy in the places that you need it. It supposedly penetrates deeper than The Vest vibrations. That would be nice. Natalie has some areas in her mid lobes that are deep, they are only visible in the lateral  view of her CXR....

I'd love to have a crack at them with a 3k handheld vibrating machine.....and it looks like tomorrow I will be getting the opportunity.

In the midst of all of this I realize that I am getting excited over medical equipment. I also realize that I am getting excited over spending close to 3k on a handheld, vibrating piece of metal and plastic.

Now those are the true joys of CF....the moments when you realize you live in an altered state of "normal", and you're completely okay with that.

 Because the truth of the matter is that I would rather my altered state of normal over the alternative any day of the week.

My best to you. ~j

Hiding out and ignorant ERs.......

I'm not going to even try to lie. Ive been hiding, making excuses, avoiding any real thought or logical reasoning for quite a while. My posts, however few and far between, have remained superficial for a reason. There are people reading this that I just don't want to open up to. Isn't it ironic that those who are closest to us, are the ones that we keep the most from.

I would share nearly anything with some of my readers whom I have never met, yet hesitate....leave out certain things with my family and my friends....backwards much? I think not.

Everyone has ideas of who they think you are. When things go wrong, go right, when things just don't add up.....Do you really want to seek advice from the people who already think you're a bitch, think you're retarded, think that you are, by far, the family f&%k up? I think not. I just don't want to hear..."well Juli, you know, we told you so." Or "well, that's just the way things go." Or worse yet, not hear anything and let another family member come back to you and say "hey, you might want to lay low, they re talking about you again."

I've made a huge mistake. HUGE, giant, gargantuan, massive mistake. How to fix it? I don't know. Some of the most traumatically horrible things that have happened in my life have been a result of me trying to "fix" my mistakes.....I don't think I'm going to fix this one, just going to let it happen. No sugarcoating, just let it go ahead and blow up and see where the pieces fall.

All of this lies beneath what is really going on. Natalie. Natalie is always going on. She is a never ending pile of worry and fear.

We had our 3 month checkup yesterday. O2 sats are still down, cough, no fever, just general yuck.....so what do we get? 21 days of antibiotics....yeah, you heard me 21 days. That's nearly a month! aaaaannnnnd its Omnicef. She hates this stuff with a passion. She gags, she runs, anything she can do to get away from the white medicine, she does....its going to be a long 21 days.

Treatment frequencies are increased, mls have been increased, its too much, too fast. I'm trying to absorb it all and figure out what it means, while trying to carry it out simultaneously. What does it mean? Nothing. Everything. It means she is sick. CF sick. Not I have a cold, I have bronchitis, I have strep, I have a sinus infection, nor an ear infection...there is a difference, she is CF sick and that scares me.

To top it off, she decided to jump off of the sofa last night. She landed directly on her right side, her rib cage began to bruise immediately. I just knew she had broken something. So, after a day in New Orleans with the CF team. We spent the night at the hospital with the other late night ER peeps. In general, it could have been worse. She entertained us, and the waiting room. It wasn't a total loss. She's going to be a star one day. She loves the attention, so animated, so full of life...even when she is sick, even when it hurts to cough, even with bruised ribs, she is larger than life. My tiny ball of light and energy, waiting to give me a heart attack.

On the flip side, she may as well have been a rat in a cage to the ER doc. We went to a new hospital that we don't usually go to because it was closer, apparently they don't see much CF. The nurses, only concerned about her cough, the MD's...they too, only concerned about her cough....even the xray tech, concerned about her cough. After correcting each of them that we were not there for her cough, she was already being treated for that, that we were actually there because she fell, the same confused "seriously?" look on their face....."...But she has CF, and a cough..." the ER doc replies ignorantly...."Yes, she does, and a 21 day course of antibiotics ahead of her....I just need to know if I can do her vest treatments without puncturing a lung, that's all..." She stutters to find words, I had to explain to her what a "vest treatment" was after she asked what kind of nebulizer treatment that was...yeah, it was awesome. So after 5 hours hanging out in the ER, we got the go ahead to go home, her xrays were clear as far as broken bones, but her chest xray wasn't too hot. Guess they wanted to throw that in there for the fun of it, perhaps for their amusement, hopefully for their education. And yes, there is a difference between taking an xray of the right side of her rib cage and a chest xray....

Soooo here I sit. Ive picked up a 2nd job. I don't have much free time. I do apologize for the abrupt exit. I'm trying to get my brain back. It seems to have gone on vacation. wish I could have gone too. much love ~j

8 am on a Tuesday morning.....what could possibly go wrong?

Let the food wars begin!

I guess if I were 3 and I had people shoving medicine down my throat and up my nose and strapping me into weird shaking contraptions, I would want to control what I could too. The problem is that Natalie chooses to control food. She doesn't realize what she's doing.....

Other times I think its just genetic.....there are some picky people in the family and her eating bears a close resemblance to them. The good news is that they all have outgrown it, the bad news is that it took each and every one of them a minimum of 20 years to accomplish that. I don't have 20 years to wait for her eating habits to change.....

If its green you can forget it, if it has more than one part to it (ie. a hamburger) you can forget it, if it requires being chewed for more than 15 seconds you can forget it....this leaves very little to choose from, but I am ever diligent, ever trying new things.

Sesame Street is blaring on the TV over the sound of the vest between phone calls to the MD office...... Natalie is coughing, but no fever, I think this is worse than being "real" sick. They wont do anything if she isn't running a fever, we just have to up her treatments and hope for the best. If they had to watch her cough and gag and sit on the sideline helpless to do anything but encourage her, maybe they would be more concerned, I'm not sure. Maybe there really isn't anything they can do, maybe we're already doing everything that we can.

Other than the (make you gag along with her) cough that Natalie has....she's fine. No fever, no malaise, no other signs or symptoms which makes for an awkward situation. To go out or not to go.....she needs her exercise, that will help, but I don't want to get her over tired or overheated and potentially do more harm than good. ugh!

Maybe a little further evaluation of the situation is in order, its early. Natalie was up and moving early this morning....that means we're all up and moving early.

Denial is not a river in Egypt......

My brain hurts....earlier today Piper, the author of "A Matter of Life and Breath" a blog right here on Blogspot, posed some very thought provoking points that I have mulled over and over and over and over......well you get the point. She questioned the idea of being positive vs being real in the face of such a massive foe, CF of course :)


I won't sit here and lie and say that there aren't days that I am angry, there are days that I refuse to acknowledge her disease, days that she gets her medicine and her treatments but the reality gets shoved waaaaay back to the farthest reaches of my mind, days that I want to sit and cry, days that I go camera crazy and film her doing the most normal random things "just in case", there are days that I search for life insurance, burial insurance, wonder if I would make her funeral the send off of a princess or a dark solemn event.....I go there, I would be foolish and unrealistic if I didn't validate those feelings by giving them light just every once in a while. Of course Im worried, of course Im scared, I know every sound she makes, every different cough and whats wrong by the sound of it, I know the color of her snot and every other bodily fluid and excretion and know what its supposed to look like at all times and can tell you when there is even a slightest change.....

But the honest to God truth of the matter is that those dark places, those dark moments are not the reality of CF, at least not the CF that I deal with day in and day out. The reality of the CF that I see, that I deal with on a daily basis is a 3 year old little girl painting herself with permanent markers, munching on popcorn, peeling wrappers off of crayons and calling me at the top of her lungs everytime its time to wipe her boohiney. My reality is taming the squiggle wiggle worm while trying to do manual CPT, chasing after her with 5cc of Periactin because she thinks its funny to see Mommy run, and ooooooopen wide when its time for enzymes....Im grateful for these times and I thank God everyday for the life that I have, even the bad days.

That being said, just because this is my reality today, does not mean that this will always be my reality. As a matter of fact, we just got the call today to schedule a training day for Natalie's new Vest System....a corner, a revelation, a change in Natalie's condition....hence a new reality.

Just because things wont always be this way doesn't mean that I cant use my blessings and good fortune to help others, and by help, I mean staying positive, encouraging those who need it, and supporting those who need it the most in any way that I can. And what a disservice it would be to my daughter if all I ever focused on was the textbook reality of CF, and what an ugly reality it is.

I guess what it all comes down to is that the way you approach this disease is as unique as the disease itself.....we all have our own feelings, our own approach, and every single way is valid, its real, and its ours.

Who loves Scandishake? WE love Scandishake!

Natalie has been on nutritional supplements since she was 18 months old, her appetite has never been fabulous, we have had struggle after struggle trying to figure out what foods she likes best (changes weekly), what she "feels" like eating (usually not much), and at the begining (18 months old or so) we usually ended up settling for whatever Natalie decided, as is usually the case with a toddler, you cant MAKE them eat.

Initially we started Natalie on Pediasure....it was the sure fire answer to our prayers, packed with vitamins, fat, calories, and protien. It worked too, she gained at whopping 3 pounds in 3 months and we were more than happy to fork over the $9-$12 per six pack in order to keep the weight piling on. After 6 months, the weight gain started to fall off and the doctor added Periactin to our medication regimine. We didnt think much about it and continued with the Pediasure and the Periactin and continued to slowly add on some weight. Up until about 6 months ago.....then, one day, Natalie said "No".....uh oh?!

The extended time drinking the Pediasure had taken a toll on Natalie. She was TIRED of it and she absolutely REFUSED to drink ANYTHING out of her sippy cup because she thought it was all Pediasure....we had to get her used to her sippy cup again AND find a new way to sneak in some extra calories. Enter Scandishake!

Scandishake is NOT a meal replacement and IS NOT fortified like Pediasure is, but when it comes down to calories, weight gain, and taste....it wins HANDS DOWN! Granted it is more expensive, $9-$12 for a four pack, plus its not pre mixed (you mix it with 8 oz of whole milk) and if you try to drink it before its fully dissolved in the milk, its kinda grainy (blech!) But if you do it right, I havent found anything that beats it, AND Natalie will drink it, even after our unfortunate Pediasure experience. It comes in different flavors (vanilla, chocolate, strawberry) and it has 600 calories when mixed with 8 oz of whole milk (woot!!)

So anyways, just an opinion, it has worked for us so far......hopefully she wont declare war on Scandishake too :)

Clinic appointments and reality checks......

Who says CF clinic appointments cant be fun?? Natalie has a HUGE personality that takes over any room that she is in....she's dominating, she commands attention, and after all, who could resist?? she's just sooo darn cute! CF clinic is much like visiting family,albeit strange and remote family, but family just the same, after three years the nurses are like cousins that you didn't hang out with when you were young and the doctors are kinda like that Uncle that you don't mind talking to, but always talks about something you don't want to hear about :) They know when Natalie is coming because she literally runs into the nurses station at the clinic looking for our nurse, and looking for stickers. They are always happy to humor her. We draw on the bed paper in the rooms, play with the toys on the wall, and wait, patiently wait for what could make our day better, or could make the ride home a mind blowing rush of "what ifs".

Ive known since Natalie was 5 days old that she had Cystic Fibrosis. Even so, perhaps Ive just not fully accepted it. I understood the pancreatic insufficiency, the need for enzymes, I just assumed/hoped/prayed/imagined that her lungs would always be healthy...soooo apparently that's just not the case. In a dramatic turn of events, the problem at today's clinic appointment was not her weight, in fact her weight today ranked her in the 70th percentile for her age (WOOT!!!). The issue at hand is Natalie's lungs, there are marked changes from the last chest xray to the current chest xray. What does that mean? What do we do now? Well, quite frankly, it means that we hang on for dear life....fly by the seat of our pants into the wide wonderful world of "The Vest"....sounds scary, sounds intimidating, sounds like a big fat failure on my part.....however, in all actuality, its just the nature of the beast....a corner we must turn, a fight we readily accept, and might I add, expect to win.

Always and adventure, Always a story

I never realized how amusing my life is until I decided to start sharing it with you guys, not that I feel like my life is exciting, but Im hoping that maybe someone can relate, just maybe someone has been there, felt it, wondered it, seen it, hoping that somehow in the solitude that a mom can feel dealing with this disease day in and day out, I can find a connection, conjure a laugh, or make someone feel not so alone in their quest. Our day started out with grocery shopping. I am a nurse and I only work a "weekend special" for those of you who dont know, thats 2 16 hour shifts, one saturday and one sunday, so im pretty much out of pocket until monday, the good thing is that I am home 5 days a week with my little ones :) anyhoo, being gone that long requires groceries to be stocked so that there is an endless list of choices on the food end, i try to make it as easy as possible on her daddy, and in the end that means that its easier on me. On the way there, i did it, i admit it, i bribed a 3 year old, i told her that if she drank ALL of her scandishake, i would buy her a toy, and she did (YAY!) so mommy bought a toy :) it only took her 30 mins to pick it out too, i couldnt rush her, after all it was my own doing, right? i sat and watched her as she stood in the toy aisle, gazing in wonder at the what must seem monstrously tall and shelves of toy after toy, for a moment i envied her, how wonderful the small things are, toys, christmas lights, rainbows, sprinklers, all the things that seem common place and ordinary by the time we've grown "older and wiser" by the time we got to the checkout, the ice cream was melted all over the broccoli, but hey, we got an extra 600 calories in! woooohooo! :)Tonight we went to see "Princess and the Frog", it was Natalie's first trip to a movie theater. She kept asking over and over on the way there, "mommy, where is the DVD theater?" I suppose it was a cross between the fact that she knows that movies come from DVD's and us telling her we were going to the theater. anyways, i think i enjoyed it as much as she did, not that the movies was all that great, but I enjoyed watching her see everything for the first time, it must have seemed so big, so amazing, and for the second time today, i appreciated the little things just a little bit more because of her, because she is part of my life. My little girl is amazing, and she just happens to have CF.

Oh the guilt that comes with brushing her hair and telling her "No"

I love waking up in the morning to her morning breath and her saying "mommy, the sun is awake!". There is rarely a time when she doesnt start my day off in a really great way, I love this age and all of the curiosity and imagination that comes with it. Natalie is 3, but she is soooo smart....i know, i know, all moms think theyre child is the most beautiful and the most intelligent, we're supposed to :) After the initial morning routine has been completed, c'mon you know the drill......the fight to brush our teeth, whats for breakfast, what kind of "food mood" is she in today, enzymes, periactin, vitamins, 15-20 mins of CPT *whew* goes by quickly when you're typing it, but its at least an hour and a half process, she's a slow eater.....Anyways, after all of that comes the day's regular activities. I had to run to work this morning for a minute and so, of course, Natalie needed her hair brushed.....and this, of all fights, seems to be one of the most heartbreaking. I have detangler but she cries anytime she even sees a hairbrush. Yes, she has to have her hair brushed, yes, it must be put back, otherwise it goes in her mouth. But with all of the fights that i MUST have with her....the CPT fight, the blood draw fight, the chest xray fight, the nebulizer fight, i feel the most guilty about these, the dumb ones, I mean, in the grand scheme of things, what does her hair really matter, must she cry over this, must i be so insistant on the hair being brushed??? Then its off to the store to pick up some applesauce, the portable kind, that has the lids and are "single serving" so we can go out and about for a while without worrying about getting enzymes in her, and of course now there's the toy fight. Christmas just passed and i find it absurd that the child could possibly want anything more. We went way overboard for Christmas (we usually do) but somehow, even though there are still presents she hasnt fully appreciated yet, there is still the "I see, I want". Must she cry over a $2 toy? must i say "NO"? is the principle so important that I would have her cry over something so small when she has so many other, more important things to cry over? Day in and day out she tolerates things that other children have no idea about. Shes been poked and prodded and xrayed and tubed and monitored......doesnt this deserve a little wiggle room? Doesnt this deserve a break from "mommy the nag monster"? Or is it simply that I am so overwhelmed with guilt, i feel guilty that she has to endure this, why not me? Ive prayed and prayed, "God just give it to me, let me have her pain, let me have to take the meds, let me be the one to do the treatments, just let her be healthy and give it all to me" In the end, this is what we have been chosen for, in the end she must learn the lessons that all children must learn: hair and teeth have to be brushed, you dont always get the toys that you want, when you want them, everyone is different, friends are special people, sharing is a good thing, do unto others as you would have them do unto you, and Mommys are there to make sure you know how things are supposed to go, even when they themselves do not understand why they are this way.

The good days, the bad days, and the ones that make you want to cry......

I am a nurse by profession, a mother by the grace of God, one of my daughters just happens to have CF. I am a fiance, a daughter, an Aunt......I wear many many labels and all of them is a caretaker in one form or another, this is my lot in life, i enjoy it, i thrive in it, but when I percieve failure, I can make life very hard for me :) Especially when I am thriving on the professional end but feel like I am struggling at home, when my patients are all doing well, and I cant even get Natalie to take a bite of food, that day, that moment is a hard pill to swallow.......




Today was a good day........one of those, the ones that make you sit back and say to yourself, "Im okay, she's okay, we can do this" . Natalie has eaten well all day, 4 pieces of bacon and a piece of sausage with grits for breakfast, some apples and peanut butter with a pediasure for a snack, chicken and fries for lunch, and the list goes on and on, shes been a human vaccum cleaner today and that, my friends, makes for one happy mommy...........The problem, it seems, that there arent that many days that are just okay....maybe its just being in the midst of it makes your memory short, im not sure either way. I know that finding high calorie foods that are have real nutritional value has been the new mission in my life (aside from raising my two little girls). It seems like everyone is so calorie conscious, i have to do two rounds of grocery shopping, one round so Natalie has her high calorie, high fat, high protien diet, and another round so the rest of us dont blow up like balloons......the attempt at balancing is never ending, but what a ride, huh?




However, everyday is not so blissful. There are days when she would rather do ANYTHING other than eat.......days that im lucky to get 500-600 calories in her, days that i want to sit and cry, days that it seems that a feeding tube is coming and would be a blessing, days that i just dont think that God chose the right mother for this little girl because Im OBVIOUSLY not doing something right........then she crawls in my lap and says "mommy, i so glad youre here" in that sweet three year old voice, and i know im here for a reason and there's nowhere else Id rather be.