Thursday, April 28, 2011

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.

Monday, April 25, 2011


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. 

Wednesday, April 20, 2011

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.

Friday, April 15, 2011

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'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.

Monday, April 11, 2011

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.

Sunday, April 10, 2011

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 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... 

Friday, April 8, 2011


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 $ 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.

Wednesday, April 6, 2011

[Visitors, Part TWO] damn you Marvin Gaye & Tammi Terrell!

Ok I gave you my perspective on the "visitors" living in our house. Now let me give you my perspective on the "visitors" that came to the hospital. And how appropriate that I'm typing this blog entry on April 6. Six months ago tonight was when Kevin went to the ER......

Marvin Gaye & Tammi Terrell. Ain't no mountain high enough? Ain't no valley low enough? Seriously? To be honest with you, I'm a little sick of hearing this god damn song! Every time I hear it I freaking cry like a baby. I cried so hard recently that I had to pull over on the freaking 405 freeway!!! Sobbing. Like a baby. DAMN YOU!!! The song is what actually inspired this blog entry. I'm torturing myself by listening to this song while typing this. Tissues at my left. Wine on the right. It's a happy cry.

So you all know the first visitors were Chad & Susie...whom I've thanked a million times over because they were my "ears" & my "shoulders" that dreaded first night & many nights after. You are both amazing friends... if I won the lottery I'd give it to you because I owe you. I owe you BIG TIME. But for the record, thank you both.

Next set of visitors were my twinsanity mamas... first to arrive was Kym. I actually wasn't expecting her. I had called her to tell her what was going on, what had happened and she actually was unable to come. I understood because she's got kids just like me. I think it was about an hour later that Kym showed up. Bitches (inside joke). I realize much much a few weeks later (after I came up to breathe) that Kym showing up in that particular ICU waiting room...well that was the second time she was in THAT waiting room. First time she was there the doctors informed her that one of her twins had passed. So, the courage displayed by Kym to show up, for me, to support me, in spite of her most horrible memories... well, that's a freaking fabulous friend right there folks. If I haven't told you already, thank you.

Next was Gina who was with my kids during the night but was relieved by Chad & Susie. She single handedly started organizing the who, the what, the where, the how... all for me. More on Gina later....but until later, here is a pic of her smiling next to her very smelly stuffed cabbage that somehow put a smile on everyone's face in the waiting room that day.... but from this pic it looked like Lauren had just smelled something else?
Then Lisa... she showed up in typical mom, drinks, blankets, hugs, a shoulder to cry on, held my hand.... I've talked about Lisa before in my blog. She helped me through my first back to school night. She was there for me so many times during preschool drop off, pick up, making sure my boys had extra hugs, offered me a bed, offered me wine (i love you!), and was just another freaking fabulous friend. The pic to the right is of the princess blanket she let me borrow...I still have it to this day. If I haven't told you already, thank you.

Then Claire & Kristy show up... at this point I'm sure I reeked of vomit because I had been nervous vomitting for quite some time but both embraced me....they too showed up with food, hugs, a shoulder to cry on, held my hand. Actually, Claire &Kristy drove me home. You see, Claire drove Kevin's one drives his car... well, pre-heart failure no one drove his car. (I started a list of people that drove Kevin's car so when he woke up he would know) I will never forget that drive home. Claire offered the most comforting words to me. Kristy drove  Claire back to the hospital to get her car & she waited.... she waited to make sure Kevin's helicopter took off...all so I could kiss my sweet boys before naptime & get on the 405 freeway to beat his helicopter to his next destination. If I haven't told you already, thank you both.

So I'm sitting at Cedars Sinai Critical Care Tower with Susie and the elevators open. Out walks his parents & his sister, my best friend Lauren. I have thanked the three of you before but I'll say it again, thank you. I'd also like to add that I appreciated when you saw me as his wife and you gave me the much needed time, alone, bedside, with Kevin. I appreciated your support in my decision making. And this next sentence is towards my mother in law alone. I believe that this was the worst thing to ever happen to me ... I experienced this as a wife.... the only thing worse would be experiencing this as a mother. For this, I felt for you and I thank you personally for walking next to me always as the "first" to see Kevin after helicopter transport when the doctors were berating me with questions,  the "first" to see Kevin for only 2 minutes after LVAD implantation, and for holding my hand during that morbid moment the night before LVAD implantation. I will leave this thanks with one saying "Riepl's are NOT quitters." The pic to the right is of my mother in law being silly, she would probably not want anyone to see this but you know, the iphone wins. LOL.

My brother... poor guy... he was one of the first people I called... telling him "I"ll be damned if I'm going to be a 36 year old widow." Within an hour he had booked a flight to LA. He was supposed to take my sister in law Sharon away for her birthday weekend. CRAP. He chose to support me. I know Sharon understood but I'm not sure if I ever said thank, thank you Sharon. Thanks for understanding I needed "wind." (inside joke) My friends Gina & Jill picked him up at LAX. They all arrived at Cedars together. He (and Lauren)always manage to make me cry. Having said this, it WAS comforting to have "blood" with me. More on my brother later. Jill however had asked if I needed anything... magazines? food? drinks? candy? chocolate? porno? blankets? coffee? Oh wait, yes, yes, you read correctly. Jill offered me porno. How freaking fantastic is JILL???? This was quite the "funny" within our twinsanity group of mamas. LOL! If I haven't told you already, thank you.

Here is a pic of me & my brother Jimmy (left)... it was taken just before he left LA... just after we found out Kevin was ok after LVAD implantation.

The first night there were many people that showed up that I feel need some recognition, people that I personally remember from that night. Jeron & Wes. Thank you so much. Your support, your love, your positive energy meant the world to me and it still does. Joe & Selena. Where do I start with you two? You offered not only love & support, but shoulders to cry on, shoulders for me to BITCH at about idiots that didn't have Kevin's best interest at heart, you offered to beat a few people up for me if I'm remembering correctly (LOL love you JOE!), your oh so many visits with Kevin during the worst times ever, .....I will never forget either of you. Thank you both. Paul & Paula. My Jewish Californian parents. They were there the first night and Paula was there a few times after as well. Thank you for being my surrogate parents because mine were so far away &my mother was too ill to travel.  Thank you for your prayers, your love, your support... it means the world. Julie. She's always been the "happy medium"... I hope you're laughing Julie.... she is an extremely good friend of Lauren's... I knew I couldn't be a very good friend for Lauren that first night so I texted Julie asking her to show up & support Lauren... she did and I thank you Julie. Thank you for showing up when you did...Lauren needed backup... and thank you for showing up in the days to follow.

My sister... her own husband has his own heart issues & yet she showed up. Freaking awesome. She did a great job of keeping me distracted (plums!) and was impressed at my medical knowledge only one week in. LOL! The pic to the left is Aunt Tina reading stories to our boys at bedtime. More on Tina later....

Aunt Rita & Aunt Marie.... my mother's sisters. The Polish Three. The witches. If you're not "blood" you totally wouldn't understand. My mother was extremely ill & could NOT visit while this was happening. BUT Aunt Rita & Aunt Marie each came for a week. TWO weeks I will never forget. I have thanked you both privately. The week I spent with Aunt Rita was tender, it was my motherly substitute, and I learned how to clean my pots with baking soda! LOL! The week  I spent with Aunt Marie... well, it was a week to cherish. Not that my week with Aunt Rita wasn't cherished... just that things happened with Aunt Marie... she paid electricians with chocolate pie, she was there when our family of four was reunited, she was there for pumpkin picking... aaaahhhh, the world is less 8 bottles of wine because of her. She was only here for 7. Love you both Rete & Marie!!!

Now that I've got my immediate thanks out of the way I can share with you the part I disliked the most that I had to endure while going through what was the worst time in my life. I mentioned earlier that I kept a list of people that drove Kevin's car, also kept a list of funny things that happened while he was on life support, and my final list was entitled "mother fuckers that annoyed me." Coincidentally the people on this list are no longer in our lives... GO FIGURE!! Oh wait, they were mother fuckers!  These were people that visited the hospital and/or invaded my husband's privacy while he was on life support and/or had no respect for me, Kevin, or his family. It got so ugly to the point where I had to supply security with a list of people that "were allowed" to visit my husband in the CSICU...these people had to show ID... this included ME! If it was a security guard that didn't know me, I had to show ID to see my husband! So, thank you ASSHOLES! How cool, right?  Aaaaah, I could go on but this is in the past and I'd like to leave it there but not before I say "FUCK YOU & YOUR MOTHER YOU FUCKING ASSHOLES!" I feel so much better now. heehee

So those first two weeks when Kevin was on life support... my boys were in some major need of testosterone. I mean Grandpa & Uncle Jimmy were at the house but honestly they were mostly at the hospital during the day. I'd like to send out a personal thank you to Uncle Chad, Phil (our neighbor), and all my twinsanity Dads for being the "male figure" my boys were desperate for. A special & sincere thanks to Sean, Jorge, & John. If I haven't told you already, thank you.

I have but another heartfelt thank you to a visitor, he's Kym's husband... John, fellow twinsanity Dad. Or as we like to call him JO-NATE...better known as Uncle John to our boys. I'd like to thank you for visiting with Kevin during the CSICU days, thank you for driving me to the hospital (25 min from the valley to Beverly Hills at 5pm!), thank you for visiting Kevin during those first 49 days, and for your continued support, for your continued visiting at home and making us feel like we were pre-heart failure, my washing machine, thank you for living so close & giving up your afternoons to be with my boys while Kevin was recovering when you could've been with yours... I can't express my thanks enough but maybe ziti puttanesca will suffice for now? :-)

More on Gina, Jimmy, and Tina in another blog entry... the three of them are entirely too emotional for me at this moment. Know that I love you all dearly and know that Kaeden, Quinton. & myself would have been lost without you.... I owe the three of you my life for different reasons... like I said, another blog entry but until then, thank you.

And more on Jedi Master Maureen, Jill, D.B., and the doctors & nurses at Cedars Sinai who were technically "clocked out" but stayed with ME anyway to make sure I was OK.

Oh and not to forget the "mobile" visitors in my car  & at the hospital via my iphone! Mom & Dad, Otto, Ron (your kindness was indeed amazing), Jay (thanks for making me cry EVERY time we talked, love you!), Jeff (on two time zones, sorry for waking you up!), those Heavyocity Guys in NYC (you fucking rock!), Goldenboy & Goldengirl (that's right, my family is filled with fucking super heroes), MU, Eileen, and anyone else I can't seem to remember at this very moment.

ATTENTION: Ed Lima....I may not have known you pre-heart failure but I certainly came to know you during these past six months. Thank you for your Star Wars Facebook posts every day... little did you know they truly uplifted me while sitting in the CSICU waiting room...may the force be with you my friend. I read each & every one to Kevin every day that he was on life support... you should know that his awareness level would skyrocket from 48 to 90 every time I would read a Star Wars quote... hands down, you fucking ROCK and I'm glad you're an Angeleno now.

PLEASE do me one favor... Please take 2 1/2 minutes of your time to listen to the very song that "gets me" every would mean the world to me. If you listen, please comment on this blog entry. Tell me your reaction, I'd seriously appreciate it. I'd also like to remind each of you reading, there isn't anything I wouldn't do for my family or my friends. There ain't no mountain high enough nor is there any valley low enough to keep me from getting to you my friend.

Monday, April 4, 2011

[Visitors] I'm from Jersey, bitches...

Wow, I've been debating whether or not I should blog about this topic.

This blog has been nothing but cathartic for me. It's been sitting in front of my computer, on my time, typing away my feelings, crying, and then it hits me..... i click "publish post" and there is this astronomical weight lifted off my shoulders.

Let me preface this blog entry with a few things:

1. Kevin & I are extremely lucky that both of our parents are retired AND had the means to be here to help us through what was the worst time in our lives.

2. Kevin & I are extremely lucky to have found such fantastic, loving, supportive friends in the local socal area. Yes, we live in LA for those following/reading my blog that don't know where we live.

3. I am extremely grateful to all of our family that took time out of their own lives to spend time here in LA, in our house, to help me & our little family. I am forever grateful for the unconditional love you gave to not only me but to my boys as well. We so needed it and we love you for every last bit. Each one of you that visited has touched my life in such a way that I am speechless. I will NEVER forget your kindness,  the never empty gas tanks, and your understanding of our situation. I needed you. Kevin needed you. The boys needed you.

The topic of "visitors" wins!!!!!

For those not aware of our living situation, we had visitors in our house for 141 days. Do you feel as if all the air was just sucked out of the room you were sitting in? Wrap your head around THIS for a brief moment......

One hundred and forty fucking one days. The first 13 days my husband was on life support, fighting to stay alive, I had no idea if or when he would wake up. [Remember, VISITORS in our house.] After my husband woke up, the emotional roller-coaster was up & down but if I'm being honest it was VERY down inside the hospital and even more down on the drive home. [Remember, VISITORS in our house.]  The many nights after leaving the hospital when all I wanted to do was go home & crawl into bed but couldn't. [Remember, VISITORS in our house.] The many nights I wanted to go home, turn on the TV, watch something senseless, alone, feet up, NOT having to discuss my day or Kevin's status & drinking a glass of wine but couldn't. [Remember, VISITORS in our house. ]After my husband was discharged, holy shit the emotional roller-coaster doesn't stop, does it? Different struggles present themselves every day. [Remember, VISITORS in our house.] Christmas comes & goes. [Remember, VISITORS in our house.] The many days/nights I just wanted to be alone in my own house but couldn't so I decided to "take a shower" instead. Oh right, "take a shower" was code for my alone time for myself. It got so bad that I stashed bottled water, magazines, pen & paper under the bathroom sink so that when I would "take a shower" I could get some much needed alone time. [Remember, VISITORS in our house] When friends of mine (I love you) would offer up their house so I could drop by, take a snooze, and not worry about being bothered by anyone. [Remember, VISITORS in our house] The mornings when people visiting us would offer to "help" me with preschool drop off when all I really wanted to do was drop off my kids, roll down the windows in my car, blast the car radio at high volumes, and cry the ENTIRE 8 minute drive home to my not empty house.

Now I'm certain I was no peach to live with... I'm sure I was bitchy most times but seriously? I was sleep deprived for more than 30+ days. My life had totally changed without notice! No one has any idea what I've been through personally, no one has any idea where I've been or the shit I've seen that I WON'T share.....

On the 142nd day I sold the futon in our guest room. It's gone. The guest room is now the boys play room. Anyone visiting us now has to sleep on an air mattress in our living room OR stay somewhere else.

Am I horrible? Probably. But you know what the kicker is? Kevin is on the transplant path......we're not on the list yet because of Mr. Insurance and please I'm so not ready to blog about that topic yet.  We were told in our "transplant education" that the first three months after transplant take a toll on the caregiver. Hi, that's me! The first three months take a toll on the caregiver because of all the biopsies that need to be done on the patient, the back & forth to clinic, the medication management, and on top of it all, the emotional part. I'm absolutely going to have to lean on our family yet again to help us out. The questions I have are:

Are either of our families going to want to help us out after reading this blog entry?

Where do I find the money to pay for an apartment or even one of those hotels with kitchens so no one has to "stay" in our house?

How do I keep my sanity this time around?

Where & When am I supposed to find time for myself? Where do I find time for me & the boys? When? Seriously? Can you answer me?

Now that you've read this, let ME tell you something. There isn't anything I wouldn't do for Kevin, the boys, my friends, and my family. I would fight to my death for any of them. I would sacrifice my life for any of them. I wear my emotions on my sleeve. I am who I am. My mother & father raised me to stand up for myself, to stand up for anything I believed in (currently fighting Mr. Insurance, again, not ready to blog about that yet), to fight for myself and to fight for those that I love.......well I'll be damned if I'm going to go against anything my parents raised me to do cause my parents are pretty freaking fantastic...... I'm from Jersey, bitches.... I will find a way, I will find answers to my questions above.....

Thanks for letting me vent.... Clicking the "publish post" button will feel so good in a minute.....

daily dressing change

Sterile dressing change.

These three words haunt us every day.

Since Kevin has an LVAD, the caregiver (that's me!) needs to perform a sterile dressing change on his drive-line site on a daily basis. This is to prevent infection. The drive-line site is where the LVAD wire comes out of his belly area and is connected to the system controller which is connected to the batteries. On the inside of Kevin, the drive-line is obviously connected to the LVAD.

In the beginning, it was extremely nerve wrecking learning about the LVAD, its alarms, the what to do's, and on top of it learning how to perform a sterile dressing change. Every nurse had their own method of sterile dressing change. Once I got it down pat, the VAD team shows us the way we were going to do it at home....WAY EASIER!! Love our SUPER VAD Ladies! SUPER VAD Ladies = the VAD team coordinators. They're freaking fantastic! I call them SUPER because they're like super heroes &should have capes attached to their backs.

The actual dressing change takes about 10 minutes from start to finish. You cannot have interruptions and whoever is present in the room while I'm doing the dressing change MUST wear one of those protective masks. And I will emphasize that this needs to be done on a daily basis. I was bent over sick back in December...still had to do his dressing change.

Since Kevin was discharged home, back in November, doing sterile dressing changes was & still is hard to find the "right" time to do it period. We've tried doing it in the morning while our boys are watching TV, doesn't really work. Tried in the afternoon but I've got work, errands to do, a house to keep clean, and Kevin has his schedule to keep too. It usually almost always happens at night after our boys are in bed. And by this time I'm exhausted from the whole day and so these sterile dressing changes have grown to be  somewhat of an annoyance for both of us. There are even times when we're going about our day and just before we go to bed, we look at each other, and say "SHIT! we have to do the dressing change!" Our lives are so busy with the boys, preschool, working, doctor appointments, VAD clinic... it really is a balancing act of sorts to keep it all in line. If you ask Kevin he'd agree with me. He even says that if he could do it himself he totally would but his left arm prevents this. So even he is frustrated.

And while I'm on the subject of sterile dressing changes...let me tell you something that is so stupid. There is this specific company that mails us all our VAD supplies for these sterile dressing changes. Our insurance covers this cost. BUT the medical company doesn't supply medical TAPE. We need tape to put over the gauze which is covering Kevin's drive-line. So we have to buy medical tape on our own. I guess they think patients can just walk around with their drive-lines hanging out. Or that the gauze will automatically stick to the patient?  So STUPID.  Ok, I'm done venting for today...

The pix below are of me during one of the dressing changes...

Sunday, April 3, 2011

"my ad woke me up last night Mommy"

I can't remember if I mentioned it in an earlier blog entry but this has proven to be quite cathartic for me, as an LVAD caregiver, to be able to vent. To be able to put my thoughts out there. To be able to let it go. Since starting this blog I have been reading the journal I kept... the journal that Kevin could read when he woke up, the journal that my kids could read when they got older...  well, said journal has been in my purse and is presently falling to bits. This particular blog entry is dedicated to my children. Dedicated to the only other people (other than their father) that "get" me, their mother. I would like to share with you instances, happenings, conversations, moments, that have all happened since that dreary October night. Moments that kept me going and other moments where I cried myself to sleep.

After Kevin was taken away in the ambulance, my boys went off to bed. When they awoke in the morning Uncle Chad & Aunt Susie were here to greet time as far as they were concerned! I put them in for a nap that day, left to meet Kevin's helicopter, and our former nanny came over to put them to bed. When they woke in the morning it was as if it was Christmas... only in family form. Aunt Lauren, Uncle Jimmy, Grandma, AND Grandpa were all here to greet them!!! It seriously was party time for them!! The next few days went on..absolutely they asked where Daddy was. My reply in the beginning was that "Daddy was at the doctors." I honestly had no clue what to tell them nor did anyone around me.

And then that dreadful Tuesday morning...I refer to it as the morning where both my boys had their first meltdown. It was as if they knew I had gotten two phone calls in the middle of the night telling me Daddy was bleeding out of control. They stayed home from preschool that morning. It was best that they stayed home with Grandma & Grandpa. They knew something was up and my new reply as to where Daddy was: "he's still at the doctors because his heart is sick." WTF?!?!?! Seriously, WTF would you tell your twin four year old boys whose house was just invaded by a schloo of freaking family that they usually only see a few times during the year??!?!?!?

Wednesday... oh F@#% you Wednesday... Daddy was still in critical condition. I went to the hospital early in the morning but made it home for preschool pick up, by myself. As we get into the car they both start questioning me to Daddy's whereabouts?!?!??!... I brokedown and had NO IDEA what to do... so I opted to the toy store... what do my boys pick out??!!? A freaking ATAT... A freaking $130 god damn ATAT. Thank my lucky stars Uncle Chad was coming over...he put it together. WEEEEHOOOO for Uncle Chad!!!!  As he arrived, I left. It was Back to School night at the boys preschool. Hello Life, can you kick a girl while she's down? Freaking Back to god damn School night?!?!?!? Our FIRST too... this blew major chunks. I was a few minutes late, worried, trying to be strong, and relieved that when I entered the doorway I saw Lisa & her husband Reid. They had a chair waiting for me and they both welcomed me with open arms. A few minutes later my other friend Claire showed up...even later than me! I felt even more relieved when she looked at me & said "oh crap you made it on time & i'm late?!!!" LOL  Back to School night continues... of course we had to draw something for each child from mom & dad. Ok Life you've kicked me once tonight & you're going to kick me again? Kevin is the creative one. NOT ME. As you can see from my creations, well, Kevin really is the creative one. I made it through my first back to school night, solo, but only thanks to Lisa, Reid, & Claire.

The few days following were rough with the boys, they so needed to see Daddy... old videos from the iphone just weren't doing it... they needed Daddy. Could you blame them? With that said, I put them to bed one evening... tuck Kaeden in... go to tuck Quinton in & he wants to talk:
Q: Mommy, do you miss Daddy?
Me: Yes, of course I miss Daddy.
Q: Me too...
[I hug him.]
Q: Mommy, I don't feel good.
Me: What's wrong? Does your tummy hurt?
Q: No, my heart is sick. Can I go to the hospital where Daddy is?

Are you crushed yet? Just imagine hearing that while "Daddy" is on a ventilator & at the time was not responsive when being taken off sedation... ummm, Ok? You're right where I was then...

The week of October 24 was when the boys got to see Daddy for the first time since Oct 6. It had been 3+weeks. My Aunt Marie was with us... Jed was his nurse... we waiting patiently on plaza level for Daddy.. and when he came around the corner... well, no one on plaza level knew us but there wasn't a dry eye anywhere. I will NEVER forget the look on our boys faces when they saw DADDY... and the screams for DADDY... it was the most uplifting experience ever and gives me chills just thinking about it. Here's a pic of our family reunited as one...

After I put the boys to bed one night...oddly enough I was alone in the house for a few minutes. What do I do? I chose to cry. Low & behold Quinton comes out of his bedroom, sees me crying, stares at me, walks over & hugs me. Tells me "don't worry Mommy, Daddy will be home soon. Remember you told me the doctors just gotta fix his heart a little more? You want me to hold you?" And from that night on Quinton crawled into bed with me for 4+weeks... my empathetic one... the one who knew Mommy was putting on a show....

As the days & weeks went on, the hospital became known as "Daddy's place." The nurses all knew our boys. And before you knew it.... Daddy was home with US again.

Since being home, our boys have clearly been subjected to the "medical world" as I like to call it... they've become more mature, and I've realized they were indeed the strength behind me the ENTIRE time.

Recently their preschool class was turned into a doctor's office/hospital... they told me there was a thermometer. "Mommy, Daddy has to take his temperature every day!" They told me there was a blood pressure machine. "Mommy, Daddy takes his pressure every day!" And then Quinton tells me "Mommy, there's no LVAD though like Daddy has."

Even more recently on the way to preschool, I'm taking my first sip of coffee while sitting at a traffic light. Kaeden says to me: "my ad woke me up last night Mommy."
Me: "What?"
Kaeden: "My ad woke me up's loud."
Me: "What are you talking about?"
Quinton to Kaeden: "You talking bout Daddy's LVAD? You got one?!?!"
Kaeden: "Yea I got one, just like Daddy... the AD is loud."
Quinton: "you mean LVAD"
Me: "so you have an LVAD like Daddy? REEEEEEEALLY?"
Kaeden: "yup."
Me: " ok well make sure you have your back up batteries with you."
Kaeden: "ok"

Children are amazing. My boys are beyond amazing... they are the reasons why I am able to do what I do. Day in, day out. Their smiles, their hugs... they are me and they are Kevin. I love them so very much and if when they're 20 + years old reading this... Kaeden & Quinton, please know that I did the best for you both during the worst time of our lives and I only did it because I love you and because your father loves you.

Friday, April 1, 2011


Let me just preface this blog entry with this: certain limitations really do SUCK. 

So if you've been reading my blog you already know about our 19 foot struggle which can certainly be categorized under "limitations." There is a whole schloo (schloo is from my personal dictionary meaning lots) of things Kevin isn't allowed to do or has to be careful. Now, if Kevin is reading this then my apologies love for pointing out the obvious to you but most people don't know what we're going through on a daily basis. 

For instance: no swimming, no baths. Not that we as a family went swimming a lot but could you imagine those living with the LVAD that love to swim?!?!?? Same with baths...I think the only time I saw Kevin in a tub was on our honeymoon when our suite had one of those jacuzzi tubs...and well, that's all the info you're getting from our honeymoon jacuzzi tub experience. (heehee)  The reason behind this is because the LVAD cannot be submerged in requires electricity to work...get it now?

So far the no water limitation isn't really a bother but this also means no splashing or throwing a bucket of water over his head. This also means he can't give our boys a bath. BIG downer in our house because Daddy always did bath time at night. It was his quality time with them since he worked during the day. Don't worry they still get quality time with Daddy. 

If you're a parent, imagine someone telling you that you're not allowed to pick up your child anymore. He isn't allowed to lift anything heavier than 10 lbs maximum. At first it was 5 lbs and we've gradually worked up to 10 lbs but apparently this is his limit. Kevin had a defibrillator put in a few weeks's about a 4-6 week healing process. He currently cannot lift anything heavier than a gallon of milk. I remember the day in the hospital when the VAD team was "prepping" me for the things he wasn't going to do the time Kevin had just woken up from sedation & was only off the ventilator for a few days.......I was sobbing like a baby. Thank my lucky stars that my Aunt was sitting next to me taking notes and being my shoulder. It was so much to take in but they HAD to tell me. They HAD to prepare me. Enough said on that limitation.

Driving is VERY limited. He only just started driving locally about two months ago. Here's the thing. He's not really even supposed to be in the front seat of a car. God forbid we're driving & someone rear-ends us. The airbag goes off, hits him in the chest. This is BAD. It could very well kill him. When he &I drive anywhere together he's always in the back seat. That's right, add chauffeur to the many hats I wear. :-) In the beginning when Kevin first came home, our little family of four couldn't be in the same car. Our cars aren't big enough to have two car seats & an adult in the back seat. Thankfully we had family here and we'd always have to take two cars everywhere. The first time we were in a car together was just before Christmas. My friend Gina let us borrow her minivan so that just the four of us could drive around & look at Christmas lights together. It was fantastic... nowadays the four of us do drive together, we take the chance and just like when he drives locally, we take the chance. 

With the LVAD implant, any pressure on his chest is NOT allowed at all. It could kill him. This is why he has to wear a medic ID necklace saying "no chest compressions, heartmate II LVAD implanted." This is why he needs  a caregiver & people around him to be his advocate should something happen to him...should he pass out.. should he lose's an extremely SERIOUS matter. Having said this, it means no wrestling with our boys, no rough-housing, no jumping on Daddy. This is a tough one. 

Having explained only some of the limitations Kevin has to deal with on a daily basis, put on top of that the issue with his left hand. It can be extremely overwhelming at times and then it can also be easy going. It's hard to explain unless you're actually living with it and seeing how BRAVE he is every day. And let me tell you, he's one brave son of a bitch. So, the next time you see my husband "venting" or "complaining" on Facebook, Twitter, or just in face to face conversation, please think before you speak. We KNOW the alternative and no one likes the alternative. No one does. You don't need to remind either of us of the alternative. 

We are EXTREMELY grateful for the LVAD implant, grateful that he is still alive, grateful for the doctors that saved his life, grateful for all the amazing support & love we've received from our friends & family.....just know that he is allowed to complain/vent as am I......everyone has struggles in their life....our struggles have limitations.