Monday, November 29, 2010

What a difference a week makes......

Thanksgiving was nice.

No running around. Good food. Saints football on tv and a win to boot.

I dont know whether to be grateful or angry....Natalie is 100% better already. Running around, dancing, laughing....not that she wasnt before, but there is just a little more pep in her step....dancing along with tv shows while doing her treatments....little differences. Her cough is nearly gone....

Its only been 6 days of treatments and the difference is unreal. Miracle medicines or just a bad doctor making a call too late after things had gotten so far out of hand that any additions would help? Im not sure. We added so many medicines with her last visit that I cant be sure which once is helping....Is it the addition of Albuterol & HTS 7%(Hypertonic Saline), or is it the Tobi, Cipro perhaps??? Pick one, any one.

I am grateful that she is better, but there is just this nagging feeling in the back of my long we've needlessly long.

I suppose the truth is that we just have to move forward with a hard lesson learned.

I am trying not to get too excited,but my mortgage broker called this afternoon. He has scheduled the closing for 4:30 pm tomorrow. He says definitely tomorrow.....*sigh* I wish that I could count on that....Im not that type of person though. I am the "plan for the worst, hope for the best" type. Some call me pessimistic, I say Im just a realist.

Christmas shopping has commenced. Natalie is asking to put up decorations already and running to to Holiday ailse at every store shouting "Mommy we neeeeeed this!" Its cute to see her get excited.

Caitlin is with her father. I am kinda glad that she isnt going to be here this week. The back and forth with the mortgage company and the real estate agent was getting to her....She is old enough to understand that things arent going as planned....I told her that it was supposed to be Tuesday or Friday and her response was "Thats what they said last week" She is frustrated, understandably so. We all are. Five months of this is enough to make anyone crazy. My girls are used to having their own space and free reign....I cant wait for them to have that again.

So here we go again. Another week. Another list of "to do's" and challenges, another week of sighs of relief and being okay.

We are good. We are fine. We are okay, and its gonna be alright.

all of my best ~j

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

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

Thursday, November 11, 2010

Keeping up....

I rarely let Natalie in the Playplace at McDonald's. Its nasty. All i keep imagining in my mind are the infinite number and species of viruses and bacteria lining the inner walls of the plastic tubes......

That being said, sometimes she just needs to be a kid.

We went for breakfast at the beginning of the week. An old friend from high school was in with her little girl. The two little ones became quick friends and set out into the maze of colors and plastic while us moms sat on the sidelines, watched, and talked.

I watched Natalie carefully and for the first time noticed that she couldn't quite keep up all the time. She stopped, occasionally winded from the constant running and climbing....It was the first time that I thought maybe she wouldn't be able to keep up with other children her age.....The thought had honestly never crossed my mind....

She never quit though. Not once. She rested when she needed to, but got right back out there and played her little heart out.

Eventually there came a time when I had to put an end to it. We went for breakfast and stayed until they were nearly serving lunch. We all had a good time and in the end, I don't think anyone noticed except me.....

Heartbroken? Not really. Proud? Definitely.

The only person Natalie needs to keep up with is herself. She is learning to listen to her body, but not giving up when she needs to take a minute to regroup.

I couldn't ask for anything more.

Tuesday, November 9, 2010

Thankful seems so inadequate.....

Tomorrow is Natalie's 4th birthday.

Four years of learning how to be a mom all over again. Four years of sleepless nights and random bouts of tears and anger.

Its taken four years to find a peace with her diagnosis. Im not sure I am completely there, even now.

Regardless of the process, I am ever so thankful. Thankful for the moments when she makes me laugh or makes me cry. I am thankful for every visit to the doctor, every car ride across the "big water" that takes us to the group of people who keep our CF world going....Natalie's CF team. They are an awesome group of people. I am thankful for her health. I am thankful for her progress. I am thankful for how stable she is right now.

Four years.

I didnt know how my world would change 4 years ago. I didnt understand.

She has made me a more relaxed person. She has taught me to take things as they come. She has made me a stronger person. She brings a different dimension to my world. She was a surprise, she was not planned, but life would never be complete without her.

So tonight I wish Happy Birthday to my littlest angel. Mommy loves you!

Thursday, November 4, 2010

A letter to Honda Finance:

To whom it may concern:

Your recent negative reporting to the credit bureau has been suck.

I have NEVER been late 30 days nor 40 days, let alone the 41 days that you are suck.

I understand that you cannot send a hand typed letter correcting your mistake and that it will take 4-6 weeks to draft one because it has to go through your legal suck.

I understand that you have notified Equifax to remove the negative statement, but it takes over a month to go through equifax's red both suck.

You have quite possibly destroyed the contract on the ONE house on the market that I liked, let alone cost me the amount on my contract guarantee and the cost of the suck.

Furthermore, you have possibly destroyed my children's hopes of being in a house for the holidays, let alone suck.

When this is all said and done, if i ever do get the chance to get into my house and get my credit score fixed and put this all behind me like a REALLY bad dream, I intend on refinancing my car. Why? Because YOU SUCK!!!!


Juli Canning