Tuesday, March 29, 2011

19 foot struggle

For those of you not that familiar with the LVAD...it 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'.....


  1. You know I never thought of this before but I'll just throw this out there. What if you switched sides of the bed so the PBU unit was next to your closet. I am sure he could get into the boys room with the 19 foot cord then. Just a thought. Or you could position it at the foot of the bed against that wall under the TV. Just spitballin'. Thinking out loud.

  2. i've been there done that. switching sides of the bed putting the PBU next to the closet doesn't work. no outlet. putting it at the foot of the bed under the tv doesn't work either...there would be no room to walk by...
    even if either of those ideas of finding a new place for the PBU then we'd have to get the electrician to approve the outlet, get the VAD team involved... and even so... if one of them wet their bed in the middle of the night...it's more than 19 feet even from under the tv positioning of the PBU. and what IF someone tripped over his LVAD wire in the middle of the night in the middle of the darkness? what then? it's a no win situation so i was basically just venting here... thx for the suggestions though! i appreciate it... :-)