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!

-----------------------------------------------------------
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.

Sending love from Santa Cruz

Ivy,

Since we can't be down there to actually see you - thanks to Casey - we can check your progress anytime, on your blog. (Technology just amazes me.)

I can't tell you how ecstatic we were when your mom called to say that you were finally awake, smiling and laughing. I'm not one to pray much, but I said more prayers for you in two weeks than I ever have in my whole life! We just knew deep down that they were all wrong, and that we would see your beautiful smiling face soon.

We are hoping and (still) praying that every day gets better and easier for you. Now you can't stay there too long because you have way too many things you want to do, but remember to take it slow too.

You let us know when you are ready for some estate grown coffee and we will be sure to get it to you. And know that we're thinking about you every day!

Love from Deb & Jes & the bats

Where My Dawgs?

Marco caught this short clip on his phone yesterday.  The video quality is dodgy at best, but you can make out Ivy opening her hand to give Marco "five", then clenching a fist for a "pound". Ivy spends much of the day in a foggy, agitated state.  Apparently rewiring the brain is a painful and confusing process. The agony she experiences is strangely, a sign of tremendous progress and is something she will likely have no memory of.  However, it's difficult to witness someone you love in such a helpless state of despair.  Thankfully Ivy gives us these brief moments of lucidity.  Her exhausted smile is a tiny hint of what's to come.

Where's Ivy?

...she came into my office only wanting to know,
"Where's Ivy?"
I didn't know what to say,
"she's on an adventure with no ETA"
"she's in LA, but not sure how long she'll stay"
"oh she's fine, she'll be back soon"
I just couldn't lie to the little girl you'd carried over the moon.
When she couldn't face her friends
and her mom didn't understand and she couldn't go to class,
I found YOU
and you two just
sat on the grass.
She'll never forget the truth you shared,
the wisdom beyond your years
and how you accepted all her fears.
YOU made it ok for her to be her, you've done that for all of us Ivy
I know this for sure.
she looked in my eyes and saw the truth...
"Ivy's hurt and I don't really know when she'll be back."
I saw her heart leap as her body went slack.
What can we do to help Ivy find her way?
she'd want us to protest, to sit in, to send letters, to blog
she'd make an impact, a loving path out of the fog
so we must gather our courage and let our collective soul sing
each individual voice made stronger by the other will bring
the answer to the question we've all known from the start
Where's Ivy?
she's here
she's here in my heart.

WWID

WWID

What would Ivy do?
A simple, processed question
driven by the mind and spirit
of the person in quest

Definition: Ivy: An earnest
infection of love and compassion
flowing from one being into the next
human or animal, constant stream
now and forever more

It's not just a question
but a way of life.
stand tall and charge
free and proud
Live!

A life of grace and elegance
opening and revealing a hidden path
holding unimaginable prosperity
that of happyness in seas of joy!

What would Ivy do?
a simple, yet so obvious question
H20, like water
just simply aquatic

Ask and receive
a theory
Scratch!
knowledge in bases of all known fact

Perfection,
hard to find yet so close
open your eyes and smell the coffee
free your mind
become a better you
and ask
What Would IVY Do!

Hi Ivy,

Grace and I are thinking of you daily, and pulling for your speedy recovery. I want to let you and your family know that although we have not known you for long nor spent a lot of time with you, that you are the kind of person that touches other's hearts and souls upon a minute's time. It only takes one meeting with you to recognize the beauty and strength of your spirit. And it is that beauty and strength that will get you through this ordeal -- along with the implacable and endless love of your family and friends. Bless you sweet girl and blue streaked hugs and kisses to your mom, dad, grandma, uncle, aunt and everyone else who is watching over you:-)

Love,
Kelly & Grace

Isolation

Since her arrival at Totally Kids one week ago, Ivy has been upset and confused much of the time. I don't think it's due to anything the facility is doing wrong, but it is a noisy place. She shares a room with two other patients, there are babies across the hall, devices beeping, staff talking, visitors, etc. It makes for a difficult environment to rest in. With this in mind, Melinda requested that Ivy be moved into the isolation room for a few days to see if it would calm her down. The staff, having observed Ivy in such distress thought it was a good idea, so they moved her into a private room. The first day, Thursday, she was already sleeping for longer durations and clearly less agitated. Yesterday, saw even less discomfort. The physical therapists have been concerned about the tension in her arms. When she gets frustrated, she flexes her arms really tightly. If she does this too much the muscles in the arms can contract. The shortening of these muscles can cause the arms to remain in a permanently bent position, so we've been working hard to keep her arms extended. Yesterday though, her arms were relaxed and stayed that way all day. Ivy has been smiling again for the first time in a week. The new room is much cooler, which suits her as she's been a sweater since she was a baby. They also resumed giving her Ativan, an anti-anxiety med on Friday, which surely contributed to her relaxed state. Some on the staff who have seen this improvement are working to keep Ivy in the private room, but it will be difficult to justify to other families why Ivy deserves it more than their child. If she does have to go back, hopefully the rest she's had over the past couple days will help her settle into the other room.

Wobbly Wings

"When the time is right, the cocooned soul begins to emerge. Waiting turns golden. Newness unfurls. It's a time of pure, unmitigated wonder. Yet as we enter the passage of emergence, we need to remember that new life comes slowly, awkwardly, on wobbly wings."
~Sue Monk Kidd~
Ivy, you WILL emerge as the most beautiful butterfly, soaring higher and stronger than ever, more creative and determined than before and we continue to uphold you in prayer and support.
Hugs,
Candy and Dick

A page from Ivy's MySpace

I was looking at Ivy's MySpace page and I wanted to share with those of you who haven't seen it, a passage that she has on it.

“As you see, within our bodies each of us has the elements needed to produce phosphorus. And let me tell you something I’ve never told a soul. My grandmother had a very interesting theory; she said that…. …each of us is born with a box of matches inside us but we can’t strike them all by ourselves; just as in the experiment, we need oxygen and a candle to help. In this case, the oxygen, for example, would come from the breath of the person you love; the candle could be any kind of food, music, caress, word, or sound that engenders the explosion that lights one of the matches. For a moment we are dazzled by an intense emotion. A pleasant warmth grows within us, fading slowly as time goes by, until a new explosion comes along to revive it. Each person has to discover what will set off those explosions in order to live, since the combustion that occurs when one of them is ignited is what nourishes the soul. That fire, in short, is its food. If one doesn’t find out in time what will set off these explosions, the box of matches dampens, and not a single match will ever be lighted…If this happens, the soul flees from the body and goes to wander among the deepest shades, trying in vain to find food to nourish itself, unaware that only the body it left behind, cold and defenseless, is capable of providing that food.” Like Water for Chocolate (115-16)

Ivy, you are the oxygen for so many of us. I can't wait until you come back to warm my life up again.

Dear Ivy, (and Melinda)
Sorry, I've taken so long to post something. I check "Ivy's corner" every day to monitor your progress though.

I have been praying every day for your speedy recovery and also for Melinda and the rest of the family that they will stay strong during the long road ahead.
I have no doubt that you will recover completely Ivy, because you have lots to do and have lots of plans for your life.

One thing I remember..., you said on your 18th birthday you were going to go out on a boat with Green Peace and sail between a Whale and a Whaling ship. I'm sure you'll be telling those whaler where to go! ....Of course Melinda wasn't too thrilled about that idea. :)
So you've got a little over a year till your 18th birthday but I know by then you'll be looking back on this experience as just a detour in your well planned out life.

I think about you everyday and have asked lots of friends to pray for your recovery also. When I tell them what kind of person you are, they are totally amazed that you are only 16 years old.

I'm sending you all my love and lots of positive vibes,

Karen Moreno (fellow Bat rehabber in Santa Cruz)

Following Orders

Those who have spent any amount of time with Ivy know she's not one to blindly follow orders. She apparently has decided to put that policy on hold. The occupational therapist worked with her yesterday from a sitting up position. Ivy is not yet able to hold this position without help balancing, but she is supporting some of the weight herself. She had her head bent straight down as if she were looking at the floor, when on command she lifted it and held it up straight. She did this twice more, in addition to turning her head, first right, then left at the request of her therapist. She's still not responding to commands consistently, but the staff are starting to recognize that she is showing progress, which is something we've known all along.

Venturing Out

Ivy went outside this today! This was her first venture out in the last three weeks that didn't involve an exhausting ambulance ride. The change of scenery definitely did her some good.

She's been struggling to find a rhythm in her new habitat. Morning tends to be calm, but the afternoon and evening seem to bring agitation. Having said that, this afternoon was relatively calm, and she seems to need less frequent doses of pain meds.

Goodbye Monroe

Today we had to say goodbye to our good friend Marco, or as we call him, Monroe as he had to return to SLO and his life. He's been there from the beginning of this hellish tragedy looking after Ivy and the whole family. We tried to adopt him as one of our own, but he said something about already having a family back home...I don't know, I wasn't really listening.

Come back soon Monroe!

A Message From Jim

For those of you who came to see Ivy at French, chances are you saw a rowdy looking guy in a leather jacket crashed out on the grass outside the ICU. That was Jim Gillespie, a long time friend of the family. He was there with us pretty much around the clock, catching naps in Frank's truck. Like so many of those who came to see Ivy, he's been a huge source of comfort to us. Yesterday he sent a message for Ivy and I thought I'd share it....

Ivy ,
I'm hoping that the new digs in Sun Valley work wonders for you. I guess you need to touch some more people's lives before you head home. That's what you do, I know that. It's just that, unlike you, I'm selfish. . .and that part of me , wants you to keep your time down south , away from home , as short as possible. Do your thing, mind you . . . with godspeed.

I'm sure too , that you already know this , but I'll just remind you of something I saw while visiting you: A HUGE thing you have in your favor is that you are blessed with the absolute best human contact available (and vice-versa). Words cannot describe the value of family and friends, that surround you constantly. Reach to your left or right , day or night , and you'll no doubt be touching someone that adores you.

Lean on them in the days to come. Lean as hard as you have to. . .they won't bend from the weight. They welcome the burden. You can accomplish everything through strength of the people around you.

For me , this turn of events has come during a time where I am making changes in my life. I am moving out of state to see if I can start fresh elsewhere. This wears a bit heavy on me. I won't be near to see your inevitable recovery . . . so I'll have to settle with written updates as they are available.

My encounters with you have been too few , too brief , but high in quality. I've learned volumes from you lately, even though you didn't say a word. You've made me realize that the issues and problems in my life, are but minor bumps in what has been a fairly smooth road. Smooth . . .to the point of being unfair , in my opinion.

It's too bad that aspects of ones life are non-transferable. If they were , you'd be dancing in your garage this very day. Hell , with all the people around you that are willing to trade , you'd be a shoe-in for everlasting life. Since that's not the case though, we are reduced to waiting for your decision as to when you will return. So Ivy, please don't stay gone too long. The world has so much more to learn from you , and the sooner we get started . . .

Like I said , I'm selfish.

Love ya' lots , JRG (Some Knucklehead).

Solidarity

Melinda and Ivy's grandma, Pat got streaks of blue to show solidarity with Ivy and the long road she has in front of her. For all who know grandma's outlook on life, getting a bright blue streak in her hair is about as likely as getting a full sleeve tattooed on her arm. But she told Ivy that if she opened her eyes, she'd put a blue steak in her hair, and we all know she's a lady of her word. The good people at Hep Kat provided the color and wouldn't take a dime for it. Paris and Brittany also came to the hospital and recolored Ivy's hair the night before she left. The people at Hep Kat have been so supportive and concerned for Ivy, we can't begin to thank them enough. They're even talking about having a benefit for Ivy in the near future! Details to follow...
Yesterday was a difficult day for Ivy though she's still showing progress. She's gaining mobility in her neck, but we are beginning to wonder if she is becoming more aware of her situation. Right now it's hard to tell if she is in physical or emotional pain. My guess is that it's a bit of both. We've all had a couple weeks to grieve, and see her progress to this point, but Ivy is just now coming to terms with what happened to her. She isn't aware of how unresponsive she was the first week. She wasn't there when we got the grim results from the MRI. And she hasn't been able to witness her own progress. All she knows is that she's woken up without the ability to use her body and the cognitive function to recognize there's a problem. Of course this is all speculation on my part. Ivy has no way to communicate with us right now and until she does, all we can do is talk to her and make sure she's getting as much physical stimulation as she needs so she can start to reform those connections in her brain.

Settling In

Ivy embarked on the second stage of her journey today. After doctors and nurses lined up outside French Hospital to see her off, she was delivered by ambulance to her new temporary home. The nurse who rode with her said Ivy had an uneventful trip, and was awake and alert most of the time. The nurse was also very optimistic about Ivy's recovery. Ivy then settled into her new space and was evaluated by the staff at Totally Kids. They also are optimistic about Ivy based on what they saw in her evaluation, and the fact that they deal with these types of injuries frequently.

Transition

Ivy is moving south. Her body is stable now and French Hospital can no longer provide her what she needs. Today she was accepted at Totally Kids, a sub-acute rehabilitation facility in Sun Valley, CA. They are able to provide for her more of the physical therapy she needs to make those neural connections she's missing right now. According to what we know now, the brain damage she sustained is mostly limited to her "white matter", which is responsible for motor skills. Her cognitive "gray matter" looks really good, and that would explain why she's been responding to what we say with laughter at the appropriate times. The hospital has been moving fast and plan to ship her out tomorrow (Thurs), so if you'd like to see her come over today and bombard the ICU one last time!

Progression

We've been told that recovery from brain injury is a long, difficult process. The past two weeks have been excruciatingly long. Last night however, Ivy showed the first concrete signs that she's still with us. She was actually in a semi-lucid state for over 4 hours! She had been getting a steady stream of visitors all day when at about 6:30 she became very alert. Her friend Jessica was talking to her when Ivy began smiling, then laughing. Over the next 4 hours Ivy was with us, responding to jokes, stories, pictures, drawings and even laughed when Marco sang a song to her. We were all completely ecstatic. She even responded to a neurological test for the first time! Typical of Ivy, when the Dana, her nurse for the night said to her; "Ivy, you're at French Hospital. You had a heart attack." Ivy laughed.

Poem for Ivy

Ivy Alvarado

When people see you smile and laugh

They begin to understand the type of person you are

Not the type who will help destroy the earth

But the type who will put vegetable oil in her car

You help animals that some people wouldn’t touch

And bring positive change to places like your school

I hear you even make for the best Subway experience

I’ve never met anyone that cool!

Your jokes and humor are one of a kind

And your sarcasm can catch one off guard

But when looking for the meaning of your words

The search for the answer is not hard

The meaning is love and affection

And some say you give it the best

To know you is to love you

And I am one of the blessed

You are someone who touches lives

And is there when they call

So when I stop to really think about it

You don’t have a type at all

You don’t have a type Ivy Alvarado

Because there is no one like you

We want you to know you are loved

And we will be here for you until you pull through.

We love you Ivy.

What Happened

Often when information regarding a sudden tragic event is lacking, we humans decide to make up the details as we see fit. It's not always vicious rumor mongering (though there's plenty of that). People, when trying to come to terms with something so inexplicable, make assumptions that may not be relevant. What follows is an attempt to clear the air regarding Ivy's dreadful incident.

What we know:
On July 20, Ivy collapsed while she was at work. She ran out into the parking to return a Gameboy to a kid who had left it behind in the shop. At some point before she could catch up, her heart stopped. Fortunately Ivy was discovered within minutes. Some kind people administered CPR and once picked up by the ambulance, her heart was revived and she was delivered to French hospital. After several inconclusive tests, we received the results of an MRI. It revealed that as a result of cerebral anoxia (severe lack oxygen to the brain), Ivy suffered a stroke in both hemispheres of her brain. Though it was a devastating diagnosis, the neurologists don't know how severe the brain damage is. They can only locate the areas of the brain which were damaged. Ivy's white matter has sustained the majority of the damage while the grey matter is relatively untouched. What does this mean? Damage to the white matter effects the messages being sent between various parts of the brain and brain stem. This manifests itself in a reduction in motor function. The issues with Ivy's heart have been dealt with. She now has a defibrillator to help prevent any future attacks.

What we don't know:

We don't know what caused Ivy's heart attack. It was likely a condition called Long QT Syndrome. We should find out definitively if this was the cause once we have the results of some pending tests.

We don't know how for long her heart stopped.

We don't know the extent of Ivy's brain damage.

We can't predict how much function Ivy will be able to recover, though she shows improvement everyday.