11 days x 24 hours in a day = 264 hours

That's right. Do the math. 11 days x 24 hours in a day  = 264 hours.

Why am I pointing this out to you?

Yesterday we went for the usual VAD clinic visit, had other dr appointments, got our Starbucks for the ride home, and we made one more stop. We went to request Kevin's medical records for the 11 days of his life that he lost, has no recollection of. 11 days that I would preferably like to forget.

I understand 100% why he wants to read the medical records. Who am I kidding? I would want to read them too.

Doctors, nurses, family, friends, and even I have been telling Kevin about those 11 days. The journal I kept only tells him the medical part of his situation that I was told. I mean I'm sure they(doctors) didn't keep anything from me. Nonetheless it'll be interesting to read the actual doctor's notes. Nurses reports. The OR reports from the two open heart surgeries he had. How many blood transfusions he needed (I lost count after 40). His vital signs. His creatinine levels (this indicates kidney function). All the times they turned his sedation levels down and he didn't respond. The times he did respond. The fevers.

I know a few things that won't be in those medical records. How long I stood next to his bed each day. There wasn't a chair in his room until after the LVAD was implanted. I'm guessing too much equipment in the room to keep him alive. The fact that I was only allowed to touch his right forefinger through gloves for 11 days because there were so many IV's and apparatus hooked up to him. The endless consent forms I had to sign so the doctors could do their job in saving his life.  How many family members & friends that walked into his room and right back out again because it was THAT difficult. The family members who upon hearing about Kevin's heart failure were actually wondering where he would be buried. Not buried,we're a "green" family. You figure it out. The same family members that wondered if I would continue living in California with the boys. ummm, YES. The same family members that asked me for days to get a priest bedside to give Kevin his last rights. HA! The person that initially brought this to my attention got hung up on, by me, TWICE. My atheist husband and a priest? Sounds like a bad joke to me. But after days of pressure from a few people, it was late in the evening, Kevin was in bad shape, it was the night before LVAD implantation, and I was broken. Not functioning. I caved. BIG time. I asked for a priest. The most morbid experience of my entire life. Ask my inlaws, brother, and his sister. We were all there. My brother, his father, and sister couldn't even stay for the entire thing because it was too emotional. On some level I think Kevin knew what was going on because his blood pressure got higher. Well, never again.

So that's my side of it... the side that I'd like to forget.

There is another reason why he wants to read them. There is a missing piece to the puzzle. It's the piece that back in October, being his wife, I chose not to alert the masses about. His left arm/hand. The night he was bleeding out of control, had to go back in for another open heart surgery... the complications surrounding his left arm/hand. This is his missing piece. The doctors have explained why, the how, the reason for the loss of function in his left hand. Compartment syndrome. BUT, I assume reading it in black & white might put it to rest so to speak. The actual "timing" of it all, how it went down, what the doctors wrote in the OR report. He's a composer. Music is his life. He breathes, sleeps, & eats music. A prior blog entry I wrote "in order for him to get his "life" back, he needs to get his "life" back." I was referring to music and his heart. I knew back in October about the possibility of Kevin losing function in his left hand. "I" chose not to alert the masses because honestly, it was the least of our worries at THAT particular moment. I had no idea what the future held. I didn't need people asking me questions about his left arm when I couldn't even answer their questions about whether or not he was going to make it through the night. Following me?

There is always hope.

Where there is a will there is a way.

Well guess what people......we have hope. We have will. And there is a WAY.

Unexpected...

Unexpected is a word that can be positive.... 

For instance, an unexpected phone call, an unexpected gift from a new friend, an unexpected book accompanied by a very kind note. Coincidentally, all three have recently happened to me. Yesterday's phone call from  Kevin's Uncle Robby definitely added sunshine to our day. You can call whenever you'd like to! Jenny, a new friend, sent me the DVD copy of Bill Cosby's comedy act I mentioned in a prior blog entry. Now I can escape to laughter whenever I need! The book with kind note from Lynne. Her kind words and thoughtfulness brought an unexpected smile to my day.  

Unexpected is also a word that can be quite confusing....unsettling of sorts. Sometimes even negative feelings can surround this word. 

I can't seem to shake this unexpected "nothing reaction." 

Basically what I'm trying to say is I'm pissed off. If one was being honest then I guess I'd have to say I'm a lot pissed off. 

You know the old saying all it takes is a little crisis for people to show their true colors. Well, clearly heart failure falls into this category. 

Let me say this: I AM and probably will always BE speechless at how our friends, family, & co-workers on three different continents reached out to me, my boys, and Kevin. Overwhelmed by the support, the love, thoughts, prayers, and positive energy we've been receiving since that horrible night in October. How amazing everyone has STEPPED up to the plate and how they continue to do so.... 

What I didn't expect were the few individuals that took me by surprise AFTER Kevin came home.  It's unsettling and very unexpected that said individuals in today's day & age can't take five minutes to pick up a phone, send an email, type a text message, something...... are you really that busy to tell someone you care? Have you seen my life lately? No, you haven't. But I'm sure you've heard because I know you've asked. Several have told me to "just let it go Tracy." Others have told me "to pick up the phone or make contact first." I've got news for you... I did and I'm done. 

I'm sure a few of you reading are thinking that I expect everyone to call, email or text... WRONG. 

I do however expect something from people that have known me my entire life though..and I absolutely expect blood to recognize. Wouldn't you?  

I figured if I blog about this I might get some sort of closure. Like any other blog entry, this will be most cathartic once I click "publish post."

For now, I WILL move forward. I will no longer let this topic rent space in my brain. I've got bigger & better things to take on... like Mr. Insurance for starters. 

Eliminate the negative. Accentuate the positive. 

traumatized for sure....

It's spring break this week, boys are off from school & I'm working from home. Yesterday I decided to take the boys to Travel Town. Fun place. We're train lovers so it was an easy afternoon of fun...or at least that's what I thought it was going to be.

We go, have our fun, both fall asleep in the car on the way home, and I put the car in park in our driveway. Kaeden suddenly realizes Daddy's car isn't in the driveway. Daddy was out to lunch with a friend. The questions begin..

"Mommy, where's Daddy?"

"Mommy, why isn't Daddy's car here?"

"He's out to lunch with a friend sweetheart."

I open the door, we walk into the house, and the search begins...both my boys start searching the house for Daddy. The kitchen, the bedroom, his office, the backyard, etc, etc.  While Quinton seemed fine  and believed my answer of Daddy being out to lunch.... it was Kaeden who seemed uneasy. And then it began.

My poor son was completely devastated that Daddy wasn't home. He didn't want to believe me that he was  just out to lunch with a friend. It spiraled into some serious crying while still searching the house for "Daddy." Still crying he came over to me and asked again "Mommy, where's Daddy?" My reply was the same as before "He's out to lunch with a friend, let's call him on Mommy's iphone. Will that make you feel better?" I'm pretty sure that made it worse because by now he had been crying for 10 - 15 minutes and the last time we used Mommy's iphone (face time) to call Daddy...well, Daddy was in the hospital. Then he started to seriously cry worse than before saying things like "I didn't hug him. I only gave Daddy one kiss when we left." "Daddy's in the hospital again? Is his heart sick?" This statement sent his brother into a small tizzy as well. Quinton starting asking "Is Daddy in the hospital Mommy?" "No, he's not, he's out to lunch with a friend." Quinton wasn't crying but looked unsure.  Kaeden was to the point of hyperventilating and I was at the brink of tears myself. It was heart-wrenching to see my sweet little boys so traumatized.

After 30 minutes of this, my brainiac idea of laying down on Daddy's side of the bed & using Daddy's pillow worked. (it worked in the past when they were missing Daddy....they just needed his smell like I often did those first few weeks) Kevin had suggested we try face time but he couldn't get a wi-fi connection so Kevin just called instead.....which honestly didn't work either. It just sent Kaeden into a tailspin yet again... more crying.. finally he calmed down and within 15 minutes Daddy was home.

Yesterday was just something that sent my mind racing. For instance, what if we get that "call" for a heart at 2 am? Naturally Kevin & I rush to the hospital and someone else comes to our house to watch the boys for us. BUT both boys will wake up & realize Daddy isn't here....Mommy isn't here. Will they be ok with whoever is here watching them? Will they be hysterical? Will they remember back to October when they woke up in the morning and we weren't here?

I know there isn't much we can do because our boys have experienced more trauma than the average 4 year old. We have started prepping them for when transplant time comes. Granted he's not even on the list yet but we're going to have to take it one day at a time for now. One hurdle at a time.

Simple things...

In a recent blog entry I shared how difficult the past couple of weeks have been for all parties involved. While this may hold true, I'd like to let all of you know that it's not going to break me. Nor will I let it break Kevin.

blowing bubbles & getting messy
 in the process

I've said it before and I'll say it again. My boys definitely are the force behind my strength. They're also my daily reminder to "enjoy the simple things in life." For any of you that have children, you absolutely understand what I'm talking about. Having children is like getting to re-live your childhood all over again. Lucky for Kaeden & Quinton both of their parents are kids at heart.

eating olives off of your fingers

Since the beginning of Kevin's heart failure, I've, well, we've learned to enjoy the simple things in life more than before.  Is it possible? YES!

Being able to let the day's problems disappear for 20 minutes, one hour, a day, or even just five minutes...it's important to stop and smell the roses so to speak. There are no guarantees in life.

Learn from yesterday, live for today, and hope for tomorrow.

getting sand all over yourself
& then basking in the sun

Enjoy the simple things in life.

The pix you see throughout this blog entry are of my family enjoying "the simple things in life." I hope we inspire you to do the same.

taking a walk in the middle of the day

family time IS family time. it really doesn't matter where you are. this particular pic was taken earlier this year when I brought the boys to "daddy's place" for a 30 minute visit.

Save water. Shower with a friend.

In today's day and age, who doesn't want to "be green?" Who doesn't want to save water by showering with a friend? (wink wink)

Well, my friends, let me introduce you to the "friend" that Kevin has to shower with...

The pix shown are of Kevin & me wearing said "friend." I wanted to let you see how different it looks on two different body types. Yes, Kevin is quite the charmer in his pic.

This official Thoratec Heart Mate Shower Gear is basically the only way possible Kevin can take a shower. Remember, he can't get the batteries or his system controller wet. This shower type messenger bag encases the LVAD's system controller in the middle, and batteries on either side.

Kevin came home from the hospital just before Thanksgiving last year. He didn't get clearance to take a shower until mid-December. We had to wait for the "shower talk" from the SUPER VAD team of ladies. I was giving him sponge baths, which if I'm being honest, we both pretty much enjoyed. Hey, we're young, we're hot, why not make the most of a sponge bath when one can?

The first month he was taking showers I had to help him out. He was learning how to live with the LVAD on a daily basis PLUS he still had the wound vac attached to his left arm, that was of no use to him that first month home. Needless to say there were a lot of gadgets to unhook, wounds to wrap up, wires to unscrew, and a learning curve on "how to do this efficiently" for us.

In the beginning it took almost an hour to get a shower completed from start to finish. Nowadays only about 30 minutes from start to finish. After each shower I have to do a sterile dressing change on his drive-line site.

Let this blog entry serve as a reminder of the simple things in life.  The next time you want to just take a "quick" shower... think about how difficult it would be to take a shower with a messenger bag, weighing about 6lbs, hanging off of your body and only have one fully functioning hand.

laughter IS the best medicine...

Let's be honest here... I've been having a rough few days.

At most points during my day I just want off this emotional roller-coaster.

How much longer am I going to have sit by and watch my husband go through all of this?

How much longer am I going to have to argue with some insurance claims employee who gets paid a dollar three eighty an hour? (that's right... dollar three eighty is from my dictionary...well, actually my dad's dictionary and well, enough said)

Does anyone out there (other than fellow caregivers & LVAD patients) really get what we're going through?

Kevin is not your typical LVAD patient. Only hours after his LVAD implant he was bleeding out of control...I get the call 2:30 am for consent to take him back into the OR. I say yes. I get a call at 5:30 am for consent from a plastic surgeon who tells me Kevin has compartment syndrome in his left arm between his wrist & his elbow and that this surgeon needed my consent to go & oxygenate the muscles to try and preserve the function in his left arm. WTF? (for those not familiar that means WHAT THE FUCK) I say yes, you have to save his arm. You HAVE TO save his arm, he's a fucking composer..you know, like in music..he plays the guitar, the piano, trumpet, cello, and his hands are his LIFE. His life.  HIS LIFE.

It was thought after many surgeries on his left arm that he would never get function back. They also thought my husband was going to die that first night. Kevin is indeed a fighter. With occupational therapy he has more mobility/function back in his left hand than the plastic surgeon thought he would ever have. Now, having said this and having talked with his plastic surgeon...there is HOPE. With tendon reconstruction and possible muscle transplant...he could get almost 80% (possibly more) function back in his left hand. Aaaaaah, there is always a catch. No plastic surgeon or hand surgeon will touch his  left arm until his heart is fixed. So in order to get his "life" back... he needs to get his "life" back first.  Following me?

And I'm still oh so not ready to discuss the matter of health insurance and why we're not on the heart transplant list yet. It's one of the reasons why I'm having a bad few days. BUT I will tell you that Kevin was approved to be on the transplant list pending insurance. Insert scream here.

So, everyone reading this knows I'm not just an LVAD caregiver. I'm a mother, wife, friend, employee, chauffeur, volunteer, now blogger..... a jack of all trades, master of none so to speak. Most days wearing all of these hats can be quite challenging. I absolutely cannot be perfect at all of them and clearly one of these hats won't be worn to perfection. It's a balancing act of sorts that I personally struggle with every day. Lucky for me I have friends I can lean on...friends who remind me that anything is possible.

Anyone ever watch Bill Cosby's stand up? The one where he's wearing a brown suit. It's from years ago. Puts me into a laughing fit every time. We're talking hysterics. So much that I actually forget the rest of the world. When I was pregnant (and on bed rest) with the boys I would watch this particular Bill Cosby stand up act all the time. It was the only thing to get my mind off of worrying about these little people growing inside me. It was the only thing that kept me from thinking "how the hell am I going to raise twins?" Well, I asked Kevin to go onto Netflix last night to see if we could rent Bill Cosby's stand up act. He agreed. I was giddy thinking about all the laughter in my future. He goes on and wouldn't you know it... only a DVD rental...can't just click a button on the tv to watch it.

Laughter certainly IS the best medicine and I'm in need of some good laughing... 

static

A strong static discharge can cause the LVAD to stop.

I don't like this. I'm sure you don't like this either.

No vacuuming for Kevin. No pumping his own gas. Steer clear of the dryer too. He always has to wear shoes/sneakers with rubber soles on them to help prevent static. No cleaning tv or computer screens for him either.

Ok so here's where I get to vent for the day. All of these "can't do's" just means more on my already long list of things to do. That's right. I'm complaining even though I know there are others out there in the world dealing with worse....oh right, one of those others is my husband. (LOL did I just refer to my husband as one of the "others?" I guess you'd only laugh if you were a fan of the tv show LOST.)

I actually used to like vacuuming. Not anymore. I loathe this household chore. Loathe it because when I'm done I've got to spray static guard over all the carpets in the house. Open up all the doors & windows to get that static guard smell out of the house. Spray static guard on our sofa.

We have two cars. I have to put gas in both of them all the time now. I hate pumping gas... just hate it.

I'm big on taking my shoes off when you enter my house... taking my shoes off at other people's houses... I'd prefer whatever I walked on during the day didn't get trampled all over my house or on top of my ottomans.

Clean tv/computer screens? Did I ever do this? NO, but now I guess I have to......

Hey Kev, I'm leaving for work right now....there's a load of wash in the washing machine. When it's done can you put it in the dryer? Nope.

We recently went to a birthday party at one of those indoor playground places. One of those places where everyone has to take their shoes off at the door. All the kids & adults have to wear socks. So, Kevin was contemplating not going because of the whole "wearing shoes" aspect. He came with us. When we explained at the front desk why Kevin couldn't take his shoes off...the guy behind the counter clearly looked confused (how many people really know about LVAD's?) & told us we could buy those little booties for $2...you know, the kind that doctors & nurses wear in the operating room. With a little persuading and look of sympathy on my face, he didn't charge us the $2...just gave us the booties.

That's all I got for today folks. Going to make coffee now because I'm exhausted.