Stepping Back To Step Forward

Just wanted to post a quick summary of the past week:
Ivy's replacement defibrillator was successfully installed. The recovery from surgery will set her physical therapy back a week. But by Tuesday she should be picking up her exercise regimen roughly where she left off. Friday and Saturday were difficult at best. I won't go into details, but I will say: the staff overlooked something very basic to Ivy's health, which caused her pain ranging from mild discomfort to complete agony for a couple days. We raised hell, problems were rectified, apologies were issued, and now she's feeling comfortable again. Today, in my opinion, was the best day Ivy's had since the last six weeks.
**A quick note to anyone overseeing the care of a loved one in the hospital: Pay attention to EVERY detail because there is a chance that "the professionals" are not. I know that people in the medical field are overworked. I understand that most professionals take their jobs very seriously and work really hard. But there's always a chance of being blindsided by incompetence and if you're unprepared, it can set the person you love back a couple of days or even worse. Additional note: Nothing like this happened while we were at French hospital. End of rant**

To close, a message from Ivy's Aunt Leann:
Hi Ivy - I have been following your blog, and I'm so impressed by all that I have read from all the people that love you. Wish I could say that I know you as well as they, but what I do know is that you have touched the hearts of many and we are blessed as a family to have you. Just wanted to let you know that all of us here are pulling for you and that you are in our prayers.
With Love
Leann Feliz

elle's Ivy story

This is an Ivy story from way back. My daughter, Kira asked me one day if Ivy could spend the night. The girls must have been about 5 or 6. So I said sure but we have to ask Ivy if she wants to and also if Melinda thinks it would be okay. We got the approval and also found out that this was Ivy's first sleepover. This little bit of information changed everything! Now Kira and I not only wanted Ivy to have fun but we wanted it to be perfect.
It was all going along fine, the girls were having fun, I was having fun with them, and we had decided on spaghetti for dinner. Here's where the trouble starts. I got it cooked correctly(me and cooking, a crap shoot). Then I asked Ivy how she liked her spaghetti. Cute as ever with those wonderful cheeks and awesome smile, she says: "Noodles with parmesan cheese and butter, please." You would think that since English is my only language I would have comprehended this request straight away. This was not the case, I gave her spaghetti with butter, parmesan cheese, and frickin' red sauce! Ivy being the sweet person she is tried to eat it so she wouldn't hurt my feelings. Kira brings the plate back and says "Mom! Ivy doesn't want sauce give her a new plate, would ya!" Twice more this happened before Ivy got her spaghetti the way she politely had asked for it. (So much for a perfect first sleepover!)
The rest of the night went well, but I think Ivy was a teenager before she braved another sleepover that involved elle!
This story is a testament to how patient and kind Ivy is. Ivy I am so lucky to know you and have you in my life! I've loved watching you and Kira grow and all the stages you've gone through. I am especially excited to see the beautiful, intelligent, caring people that you two are becoming. You will do many more great things and I can't wait to see it. I love you with all of my heart! -elle

p.s. If you're going through hell, keep going!

She's still got it!!!!

I'm sure all of you are aware that Ivy can be, how shall I say, sarcastic. Yep, I think that's the right word. I'm sure you are also aware that she can stand up to anyone and let her opinions be known. Well, she definitely still has that ability...
My boyfriend, Paul, and I went to see her on Sunday. We were amazed at her progress with communication. With this new level of understanding we can ascertain what she's feeling as well.
Well, Paul was teasing about Ivy's blue hair streak, like usual. To which Ivy let Paul know how she felt about what he was saying. Instead of the finger she has been using to answer yes/no questions, she chose to use her middle one for this special response. We all jumped up to see and Melinda asked Ivy, "Are you flipping off Paul?". She started smiling really big and then started laughing hysterically.
Like I said, she's still got it!

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EDIT:
Excellent post Fahey!!! I just thought I'd chip in some video. I wasn't quick enough to record the initial attack, but I was able to document the immediate aftermath. She is so pleased with herself!

-Casey

Dear GIRL,

I think of you several times a day and check this blog as often and I'm absolutely *thrilled* about your progress. You have a beautiful soul and a beautiful mind - nothing can hold GIRL down! I can't wait to have you come to Bat World again and help feed the babies. So you keep going GIRL, that's a direct command from WOMAN and Bootsana.
I love you dearly,

Amanda

To Ivy

Dear Ivy,
Thanks to Casey & Elle & Ivy's Corner we have been following your progress. You are very beautiful. Even though we have only seen you a handful of times we have always known how special you are. We check each day and can't stop thinking of you because you are in our hearts. There is no doubt that YOU will fully recover, just want you to know that along the way you have our prayers and you are in our thoughts daily.

All our love to you.

Kathy & Ray

Feedback

Gone are the days when we say generically: "Ivy is agitated." Now we say things like: "Ivy's stomach hurts." or " Ivy has a cramp in her right leg." or "Ivy is getting annoyed with all our questions." The reason we no longer have to use the nondescript "A-word" is because Ivy can now tell us what is causing her agitation. A raised index finger means yes and a shake of the head, a definitive no. This removes guessing from the equation, so she isn't given a med that may not be necessary. It is such a relief to have Ivy interacting with us!! Her progress seems to be picking up speed lately.
Physical therapy has been pushing her. They had her in a harness standing, trying to get her muscles reacquainted with supporting her weight. She is stronger sitting up, though she still needs support. When she is laying down, Ivy is able to lift up her lower torso. And she's following verbal commands more consistently. When I asked her if she liked her new room, she said yes.
A few other things worth mentioning:
Frank and Ivy's friends, Jessica and Marco had to go back home a couple days ago. Though Ivy would love to see Frank stay, he had to get back to continue reconstructing the house to accommodate her impending return. Thanks to Jessica and Marco for spending so much of their summer with Ivy. It's really boosted her spirits! I'm sure you'll be back soon. I've heard tell of another caravan of friends heading down in the near future as well. SLO high school has a few things in the works that we're excited about. Thanks again to everyone for the support!

A Second Opinion

On Wednesday Ivy had to go back to the ICU. Her defibrillator is apparently overly sensitive, causing it to activate unnecessarily. She was transfered to a top-notch ICU where they can run some tests and find out exactly what's going on. Ivy is safe. Her heart is fine, the cardiologist sees no abnormalities and the device itself is sound. It's just reading too much information, which causes it to interpret Ivy's heart beat as a faster rate than it actually is. It's stressful, but we've been assured that all that's required is a minor adjustment to the device.
Though it's not exactly good news that she's back in the ICU, it has resulted in much better care. To be completely honest "Totally Kids" has been a struggle. It's the kind of place where the parents really have to keep on top of the staff in order to get things taken care of. Don't get me wrong, some of the nurses there are amazing. We had a couple that went out of their way to look after Ivy. But that was more a testament to the individuals themselves than any sort of organizational standard set from the top, down. It was up to us, the family, to convince the doctors and charge nurse to look into the defibrillator. They told us (without an evaluation from a neurologist) that Ivy's jolting was neurological. If Elle and Frank hadn't insisted they rule out the defibrillator as a cause of the jolts, we would have never discovered the problem.
The staff at the ICU have taken more time to observe Ivy, and physical therapy has been more willing to push her, yielding tremendous results! (More on this later) They feel she is on the cusp of qualifying for an acute care facility. They're working hard to ensure she doesn't have to return to "Totally Kids" or any other sub-acute facility. She's now seen a neurologist and a cardiologist for the first time since she left French. At this point, her ICU transfer seems to be more of a lateral step, than a step backward.