Thursday, November 18, 2010

So much has happened.....

Its been a week since Ive posted.....a very long week.

I took Natalie to her pediatrician this week. This cough that she has been keeping is driving me insane. I cringe every time I hear it....I just want it to go away.

My frustration with the whole thing was evident that day. I was angry. I explained to the pediatrician that I had 80 yr old COPD patients whose sats were better than Natalie's.....I was scared..... I half-heartedly said, "If this is chronic and its not going to go away, then someone needs to tell me" The pediatrician looked at me once her exam was finished and said, "Juli, I think we just might be there." My blank stare turned to tears as soon as she left the room. I wasn't ready to hear that. I didn't want to hear that. Why are they giving up? Why are they throwing their hands in the air? No chest xray, no blood work, no antibiotics, nothing.....No, I'm sorry, not nothing.....they changed her nasal spray because Natalie's pulmonologist is convinced that this is allergy related.....not CF related.

As a nurse, I can see their point of view. No fever, no behavior changes, her lungs are clear to auscultation.....they have nothing to go off of......

But they aren't trying hard enough.....they just aren't.

I have an appointment with a different doctor for week after next.

On a totally different note, we have a closing date and time for our house.....As of Noon on Tuesday I will be in more debt than I can imagine and the happiest human being on the planet. I wont have much in the way of furniture...only piles of unpacked boxes and bags, but Thanksgiving will be spent in OUR house, mine and my girls' house.....Wow! I cant wait! I cant even imagine how life is going to change, how great its going to be, how hard its going to be, but I welcome the challenge.

My first order of business will be finding a refrigerator, its kind of necessary, but the second thing? Oh yes, a massive air filter.....its going to be safer to breathe in my house than outside.... and I'm going to have mini air filters in the bedrooms and the bathroom....

I am a woman on a mission.

This is the first time in the four years that Natalie has graced us with her presence that I will have the opportunity to make a home for her that is fully CF compatible. Its going to a a fabulous little bubble for her to exist in, to come home to....I think I am more excited about that than anything else.....almost.

So goes the ups and downs of my second you're at the top scared of the fall, the next you're at the bottom wondering whats at the top of the next hill....the roller coaster that keeps me crazy and keeps me sane. However crazy it may seem, I am grateful for this messed up, insane ride called life.

all of my best to you always ~j


  1. I'm glad you're getting a second opinion from another doctor. You know that with CF what is going on today may not be going on in a month. The cough could go away. It might take a few different treatments or it could go away on its own. We'll see.

    Happy you got the house. Can't wait to hear more about it.

    I have an air filter on our heater/AC. Works great but the filters are expensive. When we have fire in the LA area it keeps the smell and debris out of the house. Remember, air filters on main systems only work when you run the system or the fan, which you won't want to do all the time because of costs. Also, what do you think about all wood floors? Did you mention that before?

    The best to you three nuts.

  2. Hey stranger.

    Im getting a second opinion because we've done everything they want to do. a total of 30 days of antibiotics, changed other allergy meds, and still no resolution....its the only option I can see at this point.

    We do have all wood floors in the house. Not a speck of carpeting *super excited* its one of the main reasons that i picked this house to begin with....planning on getting the super filters for the main system, but also stand alone filtration systems to go throughout the house....thats the plan anyway....

    hope all is well with you in cali
    much love ~j

  3. When Lauren was about 10 yrs old she had a very bad cough and was put on a course of IV's, 2 weeks after finishing this course she was still coughing the same and was put on another course of IV's but still the cough persisted and PFT's were down. They finally did some blood test's and found she had grown the Aspergillus bug, this bug's symptoms are reduced Pulmonary function, coughing, wheezing and increased sputum. The good news it is treated with a course of steroids. I don't know if this fit's in with Natalie's symptoms but it could be worth exploring, especially as they have said it is allergy related. I hope you get to the bottom of it soon. All the best with the move to your new home, Sean

  4. Sean,

    Thanks for the heads up....will definitely mention it to the doctor. Threw a fit big enough for them to quit messing around and they fit me in for an appt on Monday, first thing in the morning....

    Cant wait for the new house...will post lots of pics as soon as its a done deal.

    Thanks for stopping by to visit. much appreciated! ~j