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 life.....one 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