Monday, April 30, 2012
The hospital is awesome! The areas we will be in the most were built 2 years ago and everything is shiny and brand new! It's beautiful and the people are so nice! Ella walked in this morning ecstatic and ready! Everyone was really impressed.
The CT scan went well. Joe and I were with Ella while they put her under with gas. Joe almost hit the ground, but we kept him up! Ella did great through the CT and they even drew her blood so NO POKEY's tomorrow! I almost hugged them when they told me that! We also finished all the registration for surgery, so we have one less appointment tomorrow.
After the CT was HORRIBLE! Ella did not come out of anesthesia well. She was screaming, crying, and throwing her body around. One of the hardest moments as parents. Joe and I just looked at eachother and took turns holding her. Ella gets mad when not EVERYONE is around. They only allow 2 adults in many areas, so we just take turns. She slept it off for 2 hours and woke up herself. What a relief! My mom told her she was back to herself and when Joe came back she said, "I'm BACK!".
We had the grand tour with child life and they gave Ella a surgery video. She watched it 6 times in a row when we got back to the room! They even had a play operating room with the huge lights that Ella could turn on and off. She was still pretty sleepy, so it wasn't ideal, but helpful. We saw the PICU and the floor she will be on. She smiled at all the nurses and said, "see you Wednesday". They have statue of Mickey and the Chipmunks. She doesn't even know them, but she gave them each a hug and kiss and said, "see you after my surgery" after she explained to them that she had to go have surgery first.
We took her out for macaroni and cheese and then had a relaxing afternoon (as much as possible). I took a much needed nap and woke up a bit more civil.
Overall, it's tense! I'm overtired, Ella and Joe don't sleep any better. It's hard to be so far from home and the anxiety of the unknown is just plain hard!
An awesome basket of cookies arrived for Ella and she was thrilled beyond belief!
The OR is booked for 5.5 hours for Ella. It's going to be a LONG day on Wednesday! She can have clear liquids until 10AM and then NOTHING and we have to be at the hospital at 10:30 in case the 1st surgery is done early and maybe she can go in earlier. There is a great playroom and I'm thinking a contant rotation the 4 of us will keep her going and not wear any of us out too quickly!
Surgery is scheduled for 1pm.
We have a long day of appointments tomorrow, but it's awesome that we got some out of the way today.
Sunday, April 29, 2012
We arrived in Dallas and things are going well. Our afternoon and evening worked out as planned.
Last night was so sad. Ella could not settle down! She is a stress case like the rest of us! She cried, "I just want to go home"! This is not our usual Ella who is begging to go to a hotel.
She KNOWS why we are here. I wish I could offer her more comfort, but the truth is reality of some very crappy days ahead!
Rides and entertainment will be a great distraction today and hopefully a day of fresh air will help us all sleep easier tonight!
Friday, April 27, 2012
As the movie is almost over, Joe realized she's watched the ENTIRE movie in French.
We're awesome like that. Overwhelmed and stressed....YES!
As they likely suspected, I'm ready for 2nd appeal! She had my "2nd appeal in writing" within about 30 seconds of informing me of denial (thank you email)!
I will plead my case to a review board on May 10th. I'm putting them on the back burner for the the next 10 days. I'm giving myself time to get home and settled and then I'll get my case ready!
BRING IT ON! I manage to always keep my composure on the phone and my friends/colleagues are always amazed, but I'm not quite sure how the "in person" part of it will really go!
It will be a busy day at work!
Ella has been promised a movie night so Joe and I can finish packing!
Still not real, but we're going to Dallas! I've waited so long for May to arrive! We have a few days of fun and I'm ready!
I'm working hard to embrace Joe's philosophy....."if you forget it, there's always Wal-mart or Target"!
Tuesday, April 24, 2012
I had pinned this idea long ago. There was a great sale on the cups and I filled with some crystal light lemonade mix and attached a card.
Not my best effort, but I think it will be appreciated. I can't think of a single gift to truly express how wonderful these teachers have been! Ella is LOVED, she learns a ton, and they put up with her feistiness! They have been completely supportive of all of our medical drama and they are my angels when I'm at work!
Monday, April 23, 2012
We went tonight because no one should cook on their anniversary! It was AWESOME! We had the restaurant to ourselves for the first bit, but it was filling up as we left. Our food was GREAT!
Yay for this gem! The owner/chef was our server and it was a fun experience. He went out of his way to make chocolate milk for Ella and she was thrilled.
I may pass on all trips for ice cream and walk down to Per Noi for one of their desserts instead!
To my Mista's - they have a "Mista" salad. Mike and Cindy - go try it out (if you haven't already been)!
We've had our challenges and we've had our celebrations! All in all, he's my best friend and the most awesome father I could ask for. Thanks for making me laugh (even when I REALLY don't want to) and constantly reminding me that things really will all work out!
I love you more!
Sunday, April 22, 2012
Saturday, April 21, 2012
Thanks Marlow for a fun morning!
|After walking the plank|
|LOVE the pink patch for the only girl!|
|Making pirate hats|
|Walking the plant some more and jumping into the "water"|
|Cake time! They relit the candles so all the kids had a turn |
to blow out the candles! Thanks Grandmas!
|Is that my child actually eating cake?|
|Happy Birthday Max!!!!|
He must have a brother, he KNEW how to eat his cake!
She didn't bring it up again. I changed out of my work clothes and said something about taking my shoes off. She thought it was a great idea. Then she gave me a small stick and a shoe full of sand! She was thrilled!
She is so sweet. She LOVES the sandbox at school and just wants to share a little of it with me.
Friday, April 20, 2012
I'm looking forward to going to bed early, a pirate birthday party, an opportunity for Ella to see Belle and Cinderella, and a NAP for me!
My goal is to begin packing for Dallas...but we all know I'll still be doing that until the second we leave for the airport next week!
I'm ready to get through my work day and let the weekend begin!
Wednesday, April 18, 2012
Ella got up early, but she was in a great mood. We were out the door by 6:20 and the drop off at school was awesome!
I was early to work and I knew it would be busy and my colleague was off, so I was ready to tackle the day!
The pharmacy student arrived. He wasn't organized to have his paperwork done in advance to have a log-in to our system, so I had to help him print his paperwork for rounds (in addition to doing the job of 2 people). Within the first 3 minutes.
Student while reading an email explaining that I would help him: "I thought your name was Laurie, why do you spell it like that and still say your name is Laurie?"
Me: "I'm from the Midwest! Yes, that's how I spell my name and it's prounounced LAURIE!"
I've had the hardest time with explaining my name since living in Utah. Really!?! Laurie is just like Lori, just spelled the long way! My mood is quickly fading!
Student, "where did you go to school?"
Me, very proudly, "The University of Iowa".
Student, laughing, "there's a whole lotta nothin' to do there!".
ARE YOU KIDDING ME? The morning continued as he continued to find ways for me to not like him!
The next few days are going to require a lot of deep breaths and patience for me to precept this PUNK!
What's with students these days? Did they stop teaching and enforcing professionalism???
Tuesday, April 17, 2012
Sunday, April 15, 2012
I opted to make Ella a book. It's the "I'm going to have my head fixed in Dallas" book! The cover is yellow!
It tells a story and I plan to read it to her to prepare for surgery. It has pictures from past surgeries (I had LOTS to choose from, unfortunately).
Ella is a whole year older, 50% older and it will again be a new experience for her. She keeps saying she's having surgery at "mommy's hospital" and it breaks my heart that it isn't that easy!
The book is honest. We will have fun in Dallas! We will have LONG days of appointments, pokey's and a CT scan and she has to be patient and listen. She won't be able to eat or drink before tests and surgery, but when the CT is over, we'll go get slushies! She will hurt, but she can ask for medicine. Her eyes will swell shut, but the book reminds her WE WILL BE THERE to hold her hand and keep her safe! There are pictures of us holding her and promises that we will hold her whenever she wants to be held. The pages progress through the swelling and discuss eating and drinking so we can go to the hotel and then home!
I left some pages blank at the end for people to write notes to Ella. I know she will steal hearts quickly with her comfort and bossiness in the medical world!
It's all becoming so real. We have a lot to prepare for. Sadly we are fighting an insurance war at the same time, but not sharing those details with Ella and trying hard to hide the stress!
At the end of the day, Ella smiles and says, "I'm going to be a doctor and fix heads". I smile back and say, "you can be whatever you want to be and you will be awesome!".
I love you, Miss Ella!
On Tuesday I was informed of a coding error. Ella's case was moved to step one for re-review and it did not go well. I will never understand why this had to happen and I have to move on and fight.
I've been working closely with Dr. Fearon's office and they are helping me write my 1st appeal letter.
The good news is that the surgery has been pre-approved and we can move on with the surgery. The bad news is the level of payment that it was approved at is very weak!
I have done my research. I have clinical data to back up our decision to take Ella to Dallas. I am a FIGHTER and I do not give up easily!
I have a new case manager at the insurance company and I look forward to talking with her this week. I had the most ackward phone conversation with our old one when she tried to call me Ella on the phone and I misheard her name at the beginning of the call. I actually said, "oh, you must be my new caseworker?". Imagine my embarrassment when I found out it was the old crappy one who still didn't know my name! She sure did become helpful the last few days after my conversations with her boss!
The good news is surgery will happen. Ella will have a closed skull and we can move on with life as a regular kid! Joe and I will continue to fight for payment and if all 3 levels of appeal are denied in this process we will continue to work with Ella's providers to fight for more money once the bills roll in. Dr. Fearon's office and some of the other providers are willing to go through 3 steps of appeal for more payment after the fact with my help. I'm prepared for this process to take another 6-9 months!
I plan on my first appeal letter to be sent on Monday afternoon! It's currently 12 pages including supportive documentation and references!
Wednesday, April 11, 2012
Tuesday, April 10, 2012
Almost every night, we sneak out of her room with a promise of coming back to check on her.
Me: I'll be back to check on you in 3 minutes
Ella: No, check on me in....5 minutes, no 8 minutes!
Yesterday she badly wanted some Easter candy for the car ride to school. Yes....we let her have candy in the morning!
Me: you can choose ONE piece of candy from your basket to eat on the way to school
Ella: I want 2
Me: Your choice is one or none
Ella: I really NEED these 2
Me: One or none, it's TIME TO GO!
Ella: How about 3? With the cutest voice and puppy dog eyes!!!!
Joe and I lost it....she's finally figured it out! I could see it in her eyes....maybe if I try for 3, I'll get the 2 I want!
She left with one piece of candy, but we all had a good laugh!
Sunday, April 8, 2012
Stove has been replaced and works great!
We measured and measured and measured and researched to find the perfect size dishwasher! Our counter height is not standard. At first glance the only ones that would fit were in the $200 range and I knew that wouldn't work for our family! Finally I found one! It was 33.5 inches in height!
I sat home on Friday waiting for the delivery in the morning. In the afternoon the plumber was coming to install the dishwasher. The first thing he said was, "it isn't going to fit!". I was mad. I'm not an idiot! I measured, I researched and I verifed with the salesman that it was 33.5 inches!
It wasn't! The damn thing was almost 35 inches! Why on earth would a website allow me to search by height and be wrong AND the store be wrong? From now on I will measure MYSELF in the store!
I wanted to cry!
I went back to the store and we found one that will fit. FYI - shorter dishwashers are labeled "ADA" for American Disabilities Act and are about an inch or 2 shorter than standard, but regular dishwashers.
We've eaten out all weekend because our kitchen is a disaster and the dishwasher that doesn't fit is in the middle of everything!
Thankfully I don't work until 12:30 tomorrow and I'm able to sit home and wait.....
I hope it goes smoothly and I can't wait to run a load of dishes. I grew up handwashing and I HATE IT!
We came home and watched Monsters, Inc on the couch while I dozed off!
We are very blessed this Easter!
FYI: I forgot the nice camera and the little camera is dead. Phone pics will have to do!
Saturday, April 7, 2012
|Hugs for the Easter bunny!|
|A quick pose then she verified that he will stop by |
our house tonight!
|Wilbur from Famous Dave's|
|We met Ella's friends Avery and Abby|
|Ready for the hunt|
|There she goes!|
|It didn't take her long to find 6 eggs|
|The goats were her favorite!|
|Joe joined us after his morning meeting.|