Homeless with PA....please help!

I am grateful, I am thankful, I am calm, I am collected......

I will not fall apart, I will not fall apart, I will not fall apart.....

Okay, so that whole mantra isn't working too well. Its been a really crappy day.

We started out at 6:30 am trying to get Natalie to NOLA for her clinic "appointment". There was no scheduled time, she was a write in because of the conversation that I had with her doctor on Friday.....they forgot to write her in....oops...yeah, and so it began....

Natalie's lead RT came and sat by me in the lobby and started talking about rounds of Cipro and Tobi....I was startled and confused....There's only one reason for a Cipro and Tobi combo....that big bad monster PA (Pseudomonas aeruginosa) Natalie hadn't cultured PA, if Natalie had cultured PA someone SURELY would have notified me.....right? I relayed to her that there must be some mistake. After all, Natalie's last culture was in September....two months ago....surely there must be some mistake......She thought maybe she was misinformed and went back to look at Natalie's last culture report, she told me that she wouldn't return if there was no PA and would see me when I was brought back into an exam room, but if she were positive, she would be back to talk to me....I began to sweat....I got nervous....I got fidgety. A few minutes passed and I began to relax, got lost watching Natalie and Caitlin play and watch TV. Suddenly, as if out of nowhere, I felt someone sit next to me....She was back. I looked at her and I could see it on her face....tears welled up in my eyes and I got angry, very angry.....

I made a scene. September, September people, F&%king SEPTEMBER!!!!! ARE YOU F$%king SERIOUS?!?!?!?! I didn't yell that. I wanted to. I didn't really yell at all. I did raise my voice and start to cry.....months we've gone on and off antibiotics, months I have complained to the doctors back and forth between this one and that one because this cough was not going away....months Ive complained of her decreased O2 sats and the seemingly inexplicable decline.....months......and they've sat on these lab results since SEPTEMBER!!!!

They hurried me to the back so as to limit my embarrassment, as well as their own.

Hell hath no fury like a woman scorned.....except that of a CF Momma scorned......

Being in the back didn't help too much, our CF coordinator came in and asked how I was and I lit into her too.....

Which apparently Natalie's doctor heard and at which time he hurried in, asked the coordinator quickly "in or out?" then got louder "IN OR OUT?" she slid sideways out of the door as he quickly shut it tight......

I looked at him, disappointed, and said only one word...."September?"

He gave me his assessment of the situation. Natalie had not grown enough PA to warrant it an "acute" infection and treatment, he felt that at her September and October visits that she was asymptomatic....He thought (and still does think) that Natalie's problems are allergy related....

I quickly informed him that she has been symptomatic....31 days of antibiotics, no relief....persistent productive cough with no febrile cause.....it all makes sense and he dropped the ball.....I informed him that I would be requesting copies of all further labs, cultures, and reports....I cant trust them to make the right decision right now....maybe not ever again.

He gave Natalie Tobi, Hypersal 7%, Albuterol, and Cipro to add to her ever growing medication list.....He is agreeing to treat the PA even though he doesn't find it to be a causative factor in her current condition? Sounds fishy to me....But he says that he believes that her decreased O2 is from a lack of efficiency of the Pulmozyme and not an active infection of PA.....Sounds fishy.....

We did a round of HTS in the office.....I left rather quickly and hurriedly....I got the answers I was looking for....I didn't want to look at those people anymore.

My lack of sleep and anger led to a quiet lunch. Natalie requested "chips" which is code word for Mexican food....I gladly gave in. I just kept looking at her....months...my baby has been putting up with this crap for months......for no reason.

I no sooner got home when the calls from work started.....I just wanted to lay down for a minute or two....after interruption after interruption, I finally started to doze off.

Another phone call....my realtor.

No closing tomorrow. The sellers screwed up the paperwork.....its going to be another week......

I am grateful. I am thankful. I am calm.....oh what the hell am I talking about? That was the f#%king icing on the cake. I wanted to cry, but I just couldn't. I reminded my realtor that as of tomorrow I am paying for electricity and insurance on that freaking house.....I better have myself or at least some of my belongings in it.....she's working on that......I will hear more in the morning....

I'm tired. Not just physically tired, but mentally tired too. I keep thinking that there has to come a day when things just fall into place and I don't have to fight so hard for every single thing. Why did I have to fight so hard for so long to get Natalie some sort of treatment. Why am I having to fight for every single step toward getting into this house....I just don't understand.

For some people, things just happen, they fall together nicely with bows and nice music playing in the background....at least I like to think so.

However, I am not one of those people.....I wish I were.

Especially tonight. ~j