Being an LVAD caregiver is tough enough but add a 4-yr old into that equation....wait, add twin 4 yr-olds and well that's our life. I would absolutely not have it any other way. Having said that, it is nice to commiserate with other people in the same situation. Thus far I have only met one other LVAD caregiver who has a young child as well. Hey Jamie, WHOOOOOP!!
I always wondered if I was doing the right thing for our boys when Kevin was first in the hospital. By telling our boys that "Daddy's heart was sick" because they needed to know where he was. That first morning after my inlaws, Kevin's sister, and my brother were in our house...I remember someone asking what or who was going to watch the boys. My first reaction was "they're going to preschool like they have been." And so that's what I did. Figuring that keeping their lives as consistent as possible, preschool & the teachers there became our boys' "constant."The teachers barely knew me or my family (it was only one month into the school year) but they pulled together to make Kaeden & Quinton's life as normal as possible. For this, I am forever grateful to them.
Before Kevin got discharged I remember buying this book to read to our boys. "My Body" by Angela Royston and Sally Hewitt. This book helped our boys understand more about their body. Their hearts, blood vessels, lungs, etc, etc, and even has childlike drawings to help them understand better. I somehow worked "Daddy's LVAD" into this equation so that they understood "Daddy's LVAD pumped the blood through his body for him." It's a great book. If you're a parent & are new to this LVAD roller-coaster ride, get the book.
Both our boys have always been gentle with Kevin around his LVAD.....they know not to pull wires, they're not allowed to touch the PBU or his system controller. They do help Kevin change out his batteries during the day. They help him take his temperature & blood pressure in the morning sometimes. One told me recently that "Daddy has a night light all the time".... LOL he was referring to the green light that's always glowing on the system controller. They know whenever they hear Daddy's iphone alarm go off that it's time for Daddy to take his medicine. They are like this because we've taught them from the very beginning. We've been honest with them and with the help of the nurses at the hospital (before discharge), we all educated our boys.
I'm hoping Kevin and I have prepared them enough to understand the next step, heart transplant. We haven't used the word "transplant" to them but I'm certain they've heard us say it around the house. We've told them that Daddy simply needs a new heart. Naturally you can imagine the questions that followed after this statement.....One asked why? And his brother told him because Daddy's heart is sick(he said this while throwing his hands in the air out of frustration with his brother because apparently to him this was a silly question). One asked who gets you a new heart and how? We told them that Daddy's doctors take out his old one, remove the LVAD, and put in a new one. They were thrilled to hear Daddy wouldn't have an LVAD anymore.....our one son immediately cheered in excitement saying Daddy can wrestle with us when the LVAD is gone! Yes, he will be able to do that again. Another question where do you get a new heart? insert a long pause here as both Kevin & I were stumped for a bit. Our answer.....when someone is done with their heart, then they'll give it to Daddy, but it's got to be a perfect match.
Our boys have been rather strong during this whole living with an LVAD. Tough cookies yet delicate like china our boys. They've been exposed to more than the average 4 yr-old. I think the key is being honest with them. Being as consistent as possible. Explaining things in ways that they'll understand.
In the end I'm hoping our boys remember that this LVAD roller-coaster ride wasn't a nightmare....that it was a time when friends & family came together as one to support us, to surround us with positive energy, and that Mommy & Daddy love them more than they'll ever know.
I'll end this blog entry with a recent discussion between my son & a friend of his....
K: Hey, did you know my Daddy is getting a new heart?
K: Yup. His doctors are gonna take out his old heart (motioning a scissor like motion up his own chest while talking), put in a new one and then he won't need batteries anymore!