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

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.