Monday, November 22, 2010

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 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 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 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 least I like to think so.

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

Especially tonight. ~j


  1. Ugh and Ugh! I'm so sorry. Same thing happened once with my culture results. I cutured MRSA once 4 months before my son was born. I found out when I went in to give birth and they put me in isolation. The ball was completely dropped. I think it happens more than we might like to think... I hope all goes smoother for you from here on out.

  2. :-(

    September? Wow! There are no words I could come up with that would make that better.

    I am sending you tons of positive energy and lots of hugs from Moganko for little Natalie.

  3. I wish I had some magic words to help out. I'm not sure it will help, but we have all gone through a very similar situation with doctors not paying attention to test results. I've had it happen four or five times at least where I've called to remind them to check them, especially after hospitalizations. I'm glad you put them on notice and will get copies of all future tests. Autumn can be a hard time of year with allergies and germs. Your doctors will help you get Natalie to feel better. One day at a time. You'll be in your house soon and all will be well. Deep breaths. You have what really matters right now - your daughters (and some guy who I hope is deserving of your attention. Fox is jealous.) Keep fighting - you can handle everything life throws at you. You're a nurse. You've seen it all. :-)

  4. Stacey~ I agree with you, and you're does happen more than we like to think....I am in the medical profession and it is fact....I guess I was just arrogant enough to think that it would never happen to me...lesson learned. Just wish it werent such a huge lesson...ouch! We're on our way to getting better, that's all that matters. Thanks for stopping in! ~j

  5. Josh~ Thanks for the support! I still have that video of Natalie watching Moganko that I need to get to you...its so cute! Hopefully it will stop slipping this mush of a mind I have :) I will definitely let her know that there are lots of good things coming her way from the two of you! Thanks again! ~j

  6. Hey UC! Im trying to stay on that positive mode of just wears me out sometimes. Guess I should try harder, huh? :) I guess lately I need that swift kick in the rear a little more often than "i am woman, hear me roar" side is waivering lately....BUT we're on our way to getting better, so I refuse to complain on this topic anymore. Ill keep fighting if you keep reminding me ;)This nurse has seen a lot, just wish that most of it werent related to my daughter :)The girls definitely keep me going. Thank you for always hanging with me through everything. much love! ~j

    p.s. tell Fox we're still assessing that whole deserving of my attention part....he confidently insists that he is, but only time will tell ;) all of my love to Fox as well! ~j