Thursday, March 31, 2011


I remember the first time Kevin and I went on a lunch date after his LVAD implant. It was at this local panini restaurant which was jam packed with people. The kind of place where the tables are on top of each other. The kind of place where your conversation is heard by the diners on either side of you. Anyway, this was when Kevin still wore a splint on his left arm & had to carry around the wound vac as well. The hostess seats us, we sit down, and yes, people were looking. Like really looking. It kind of agitated me a the point where I wanted to tell the other diners to take a picture so it'll last longer.  After we ordered I asked if it bothered him that people were staring? His reply was "Not at all, people usually stare at a gorgeous couple having lunch together...and well, we're a pretty hot couple dear." I agreed. The staring stopped bothering me & I enjoyed my lunch date with the hottest guy in the restaurant. 

I took this pic of him at the restaurant during lunch.... I heart him lotz. 

Wednesday, March 30, 2011

In honor of....

Today was not the usual Wednesday Kevin and I experience on a weekly basis... and by usual I mean mad dash of sorts starting with preschool drop off then racing in & out of traffic from waiting room to waiting room to finally end up at VAD clinic then back home again, pick up the boys, dinner, play time, bath time, bed get the idea. Our day was all of this but there was something special in the middle that I'd like to share.......

Just before VAD clinic we met with the Director of Child Services at Cedars Sinai Medical Center. We were giving her about 75+ books (the picture  you see to the right is only half of the books) that we were donating to the children's ward at the hospital. Clearly there is a story behind this...

So, Kevin's first tour at Cedars was, as you all know, 49 days too long. When we were allowed & had clearance (ok maybe I snuck them past security a couple of times), I would bring the boys to the hospital about once or twice a week to visit Daddy. Cedars Sinai was no longer known in my house as the hospital but known as "Daddy's place."

During one visit with Daddy on plaza level there was a child in a wagon being wheeled past us by her mother and a nurse pushing the IV. The child appeared no older than my boys. On the way home my boys questioned me about this child. "Why was she there mommy?" "Why did she have a tube thing like Daddy?" (tube thing in toddler language = IV) "Mommy, does she have toys to play with?" "Mommy does she have books to read?" "Mommy, does she know about Star Wars?" Yes, my children are like their father in that Star Wars totally freaking rules. As any good mother would reply I told them that I was certain they had toys to play with and books to read. Well when we got home that night, this conversation didn't sit well with me and I had an idea.

Birthday parties... TWIN birthday parties... it's like you have to totally outdo what you did the prior year, right? Ours were turning FOUR in a couple of months and so I had the brilliant idea of putting this message on their birthday party invite: In lieu of gifts, we're asking that each child bring one new book to be donated to the children's ward at Cedars Sinai Medical Center. All the books will be donated in honor of the doctors & nurses that saved the life of Kaeden & Quinton's Daddy.

I explained to my boys what we were doing... and honestly, they were fine with it. They were already getting an overload of presents from their grandparents, aunts, uncles, and forever friends of the family... and this was awesome that our boys were excited about Mommy's idea!!!

Birthday party came. It was Star Wars themed for those that care. Obi Wan Kenobi, Darth Vader, & Boba Fet were there. Ask any kid that was was pretty freaking cool. We were in awe of the amount of books we received to donate. My boys were in awe.

Today, we donated those books and each book has a sticker on the inside saying who it was donated in honor of....

Even though I have hugged and thanked these people at least a hundred or so times... I would like to personally thank the team of doctors that saved Kevin's life. I would like to thank the nurses that not only took care of Kevin but took care of me in the process. I would like to thank what I have nicknamed them  the "SUPER VAD LADIES"... who continue to take care of us both on a daily all totally freaking ROCK!

In closing this blog post, I'd like to remind each & every one of you that life is indeed too short...enjoy every moment, laugh when you can, cry when you want, and most of all LOVE. I love you Kevin and there isn't any freaking thing I wouldn't do for you...MUH!

Tuesday, March 29, 2011

19 foot struggle

For those of you not that familiar with the does indeed require electricity, hence my prior post of  our first power outage.

During the day Kevin wears batteries, one of each side of him, as well as a system controller that clips onto his belt...this is all attached to a "drive line" which comes out of his body. At night he switches from battery to a PBU (power base unit) which is plugged into the wall. So when I say he's "plugged in" you get my drift, right? Being "plugged in" also means he can only go as far as the actual cord lets him...that magic number is 19 feet. 

May I remind you that we have twin 4 year old boys?

Kevin has been VERY involved since day 1 of our little twinfants. This means he got up in the middle of the night with me and had just as many sleep deprived nights as I did. Even up to his heart failure he would absolutely get up in the middle of the night (we'd take turns because we're a team) to tend to whatever issue one of our boys may have had...wet the bed, sickness, rolled out of bed, croup, etc, etc... 

With that said, any issue at night, during the middle of the night, early morning... means I have to get up and handle it. And apparently we've hit the "night terrors" stage of toddler-hood.

Sure I'd like to say that I'm super-MOM but I can't. I struggle with this because I need sleep. Sure you're probably saying the same thing....that everyone needs sleep. But I really need sleep to function properly these days. Night terrors, well, it's just yet another item on my already full plate of life.

I know this 19 foot struggle absolutely bothers Kevin, without a doubt. He wants to help me but he's limited when he's plugged in. A couple of days ago he stayed up late, on battery,  so I could get some solid sleep until he plugged in and it worked. BUT he felt like crap the next day. Like serious crap.  And honestly, if I don't get sleep I'm just bitchy. If he doesn't get sleep he doesn't feel great....which is a horse of another color when you've got an LVAD attached to your heart.

So what's our solution? Deal... I just gotta deal, grin & bear it, drink massive amounts of coffee and hopefully not piss anyone off with  my bitchiness. HA! Kevin is just going to have to deal as well, get a good nights sleep.

I guess the ultimate solution is we go back to being a team when he no longer has the LVAD, right? But  that's after transplant, right? Or a complete miracle could happen & his left ventricle could recover &  the LVAD gets explanted...but we were already told back in January that it wasn't coming out. That's why we're on the transplant path.  One can only get a transplant when Mr. Insurance gets their head out of their asses though. And Mr. Insurance just happens to be one of many items on my already full plate of life. Just sayin'.....

Monday, March 28, 2011

First power outage

All that education they give you in the hospital before you go was kind of overwhelming.

It seemed as if every day I was learning something new about the LVAD, switching out system controllers, emergency back ups, what to have on you at all times, sterile dressing changes, what this alarm means, what that alarm means. I swear that it felt like my brain was at full capacity and most days the information was going in one ear & out the other. Reading about the LVAD, watching the DVD about it, practicing in the hospital, always check your battery life.... literally felt as if I was being "graded" every time I walked into the hospital.

So the other morning the kids wake up & are playing nicely. We decide to lay in bed a bit longer. No harm, right? All of a sudden out of nowhere the PBU starts beeping & I look over to see the light change colors... sure enough the power went out.  Sprang out of bed, grabbed the battery clips, put batteries in, Kevin changed the black, then the white....SUCCESS! Switched over to battery quickly & efficiently all the while the damn PBU alarm is going off. So proud of Kevin and I for working as a team....I was about the grab my iphone to dial the power company then the VAD coordinator to notify them that we had no power when the power comes back on. I think the power was out for maybe all of three minutes.

With all that education, I actually did remember the alarm. No one panicked. Even better, we acted in an efficient manner, it really is all about teamwork.

Saturday, March 26, 2011

Part TWO of how did I get here??

Sorry about my abruptly stopping my last entry... if you are an LVAD caregiver for someone you love dearly then I'm sure you've got a similar story...

So, Kevin made it through the night, still on life support, I was actually only allowed to see him in 3 minute increments...apparently every time he saw me he tried to get out of bed and one time tried ripping out his intubation tube. I remember him opening his eyes & mouthing "help me up".... heart wrenching to see him in & out of consciousness. After that he was in restraints. A cardiologist came in to put in a balloon pump. This was to stabilize Kevin enough for helicopter transport. This entire Thursday morning I was surrounded by friends.... my fellow twin mom friends. They rallied to support me in my time of need and to this day they are all still by my side.

Susie drives me to the hospital where Kevin is being helicoptered to... mind you, my dear friend Kristy had stayed at the ER to wait & make sure that Kevin's helicopter took off when it was supposed to... anyway, we arrive in the wrong parking lot to look up & see his helicopter landing. It was surreal knowing my husband was on that helicopter. Susie by the way is another awesome friend. By this time we go into the waiting room and doctors start talking to me. At that moment I will never forget seeing the elevator doors open and seeing Kevin's parents & his sister. To this day, I will never forget their faces. I found out later that my father inlaw was ready to donate one of his kidneys to Kevin if need be....oh and I found out much later after all of this that my father inlaw loathes hospitals. Within an hour my two mom friends, Gina & Jill, show up with my brother.... had no clue what he looked like but drove to the airport to pick him up. By the way if I hadn't mentioned it before... my family &Kevin's family all live back east. Soon the waiting room filled up with friends, coffee, food. The first time I saw Kevin that night he was in the CICU surrounded by at least 10 doctors and even more nurses. All of them asked me their own set of questions. All of them asked me for consent for a variety of things in case of emergency... consent for blood transfusion, consent for dialysis, .... the situation was extremely critical... he was put on ECMO Thursday evening... most didn't think he'd make it through the night. But he did... :-)

It was a rough couple of days for all parties involved. Doctors were telling me the cause of his heart failure was most likely due to a virus that just attacked his heart. The emotional rollercoaster was up, down, all around, and stopping to hit every single person in our families as well as our friends. Our boys included. My poor little boys... they had no idea that when the paramedics took Daddy away that it would be almost 3 1/2 weeks before they got to see him again.

I hung up pictures in Kevin's CSICU room... talked with him telling him what was going on... played music... played videos (via iphone) of our boys... all the while not knowing what the future would hold.

That Monday the doctors took him into surgery to put in a BIVAD...that's actually connected to both ventricles of the heart. About 3 hours into the surgery I get a phone call telling me that the right side of Kevin's heart actually recovered! He only needed an LVAD. There were some issues during surgery and that night we were only allowed to see Kevin for 2 minutes. In the wee hours of the morning I get a phone call telling me that Kevin is bleeding out of control, they need my consent to take him back into the OR. YES, fix him! A few hours later I get yet another phone call...Kevin had compartment syndrome in his left arm... doctors needed consent to relieve pressure/oxygenate his arm to preserve the function of it...YES, do what you have to do...he's a god damned musician!!!

It took Kevin nearly another week to wake up and when he did .... it was the most magical moment of my entire life. His parents had gone to the hospital originally to sit by his bedside. A nurse calls me to tell me Kevin was awake & they were taking him off the ventilator!!! His parents got sent home because they both had a cold...nurses didn't want him being exposed to their colds so they came home & sent me on my way!!! I was driving on the freeway when my cell phone rang... it was his nurse telling me she had someone that wanted to say hi... it was Kevin and he said "I love you"... then the nurse told him to save his voice for when I got there. I couldn't get there fast tears were falling just as fast as my heart was beating. I park the car & literally RUN through the lobby of the hospital... and would you believe there was a stinking line waiting for visitor passes to go upstairs to the CSICU?!?!??!? I was so impatient that I blurted out "my husband has been on a ventilator for 2 weeks & they just took out the tube today!!!" The lady behind the counter threw a visitor pass at me, up the elevator I go, I press the button to let me inside the CSICU and the doors open. That's when all hearing was gone, I saw doctors &nurses smiling at me, and when I turned the corner to his room...there he that moment I am 150% certain I fell more in love with Kevin than ever before.

His stay in the hospital was 49 days too long. He was discharged two days before Thanksgiving. This was when "living with an LVAD" gave me a new perspective on life, it was when I discovered that not only is Kevin the love of my life but he is also the bravest man I know.

How did I get here??

A typical Wednesday in our house...I worked, boys were in preschool...Kevin was home sleeping off the prior evening. He had gone to a Steven Miller film screening with a friend and he was home sleeping off what he thought was a hangover/someone possibly slipped something into his drink at a bar.

I get home around 4:15pm to find Kevin extremely sick. I automatically thought he had the flu. Within 15 minutes he looked horrible, sweating ridiculously, and had chest pain. I called 911. Within 2 minutes the firemen and paramedics of Engine 72 were at our house and they took him to the ER. I find a babysitter so I can go to the ER (thank you Gina) and on the drive there I had an odd feeling in my stomach. Sort of feeling I never had before so I called my brother & his wife telling them where I'm going....also called Kevin's sister.

As soon as I arrive the ER doctor tells me they don't know what's wrong with my husband but it looks as if  his organs are completely shutting down... they were sending him for an MRI. In the MRI waiting room I text a good friend (Chad) to come sit with me and keep me company. He and his wife Susie arrive within minutes. I would have to say that the next hour happened in slow motion...almost as if this wasn't my life.

The ER doctor was going to aggressively treat Kevin for a blood clot... they had no idea what was happening to my husband....the amount of doctors & nurses inside this tiny ER room was overwhelming on top of the fact that Kevin was having trouble breathing. They ask us to decide as a wife/husband team to give them the OK to sedate Kevin, and intubate him....meaning put him on a ventilator so that they could control his breathing & further figure out what was going on with his body. I had no idea that would be the last time I'd hear Kevin's voice, hear him tell me he loved me, &  kiss him on the lips for two weeks.

Chad, Susie, & I wait in the waiting room while they're intubating Kevin. It must've been almost an hour, possibly longer. I am certain I nervous vomited at least twice. I tend to do this in nerve wrecked situations. I remember David Letterman being on tv and us discussing the size of the waiting room chairs. They finally call us in and it was eeeeery to see Kevin on a ventilator...just laying there... nurse comes in, says they're taking him to the ICU and that he'll walk us up to the ICU waiting room.

We were in the ICU waiting room...there was a man in the corner snoring. There were strange magazines to read. No food to eat. Hadn't slept. Was getting punchy when all of a sudden a doctor walks in...asks if I'm Kevin's wife. I reply yes and without any warning tells me that my husband coded on the way up to the ICU and it took them 35 minutes to revive & stabilize him. I'm pretty certain with that sentence that doctor took all the air out of the room. As I type this I am getting the chills & teary eyed. I'm actually going to stop this entry & post's a bit much to remember that horrible night for me right now.

Welcome to my blog...

First let me say thanks for stopping by my blog. I'm somewhat new to the whole "blog scene" so please be patient with me. I wanted to start this blog because I need a place to why not blog?

As you can see by the title of my blog page I am indeed an LVAD caregiver. For those of you reading that don't know what an LVAD is... Left Ventricular Assist Device. It's a mechanical pump-type device that gets surgically implanted to one's left ventricle on their heart. It's battery operated and it basically pumps blood out to the body. It's often used as a bridge to a heart transplant.

I'm not a nurse, doctor, or anything remotely connected to the medical world. I'm a mother of twin boys and a wife who has been madly in love with her husband (Kevin) for more than 14 years. The term LVAD wasn't even a part of my vocabulary until last October when my life changed in the blink of an eye.