March 10, 2014
In-Home Care: Helping Parents be Parents
— The following letter was written by Melissa Rhodes, the mother of one of our clients in Tyler, Texas. We are honored to share it with you. —
Much to our surprise, on March 4, 2012, we welcomed our 1-pound, 14-ounce baby boy into our world, and since then, nothing has ever been the same.
Looking back now, we are so grateful for our complete ignorance, or we would have been terrified. In our minds, our tiny Nash just needed to grow, and he’d get to come home.
Unfortunately, it was not nearly that easy.
Three surgeries, three hospitals, hundreds of tests, a trach, a g-button, and seven months later – 211 days to be exact – we walked through the front door of our home with our baby boy in our arms for the very first time.
In making the excruciating decision that our sweet, delicate baby needed a tracheotomy surgery, one of the hardest parts to accept was that Nash would need round-the-clock nursing care.
I clearly remember his doctor ever so gently breaking the news to me that yes, he had to have the surgery, and yes, he would have nurses in our home for an undetermined amount of time.
Immediately, I said I did not want the nurses, we were his parents, and we would care for our son by ourselves. The doctor stopped me immediately and said, “You will want the nurses!”
So, there to meet us at our home was a nurse, and sure enough, we were glad she was there!
Soon thereafter, several other members of Epic’s team came to meet us. The theme of their message was that they were there so we could be Nash’s parents, not just his caretakers.
In Nash’s first year at home, he was getting upwards of a dozen different medications – most several times a day, ten or more nebulizer treatments, and six feeds (by g-button) each day. Just managing that schedule was a full-time job… an exhausting full-time job!
Instead of having to stay on task day in and day out, we were holding our baby, playing in the floor, rocking him to sleep, kissing, hugging, giggling, and mostly enjoying being at home with Nash.
Now, more than a year and a half later, we are chasing him around the house, practicing new words, playing with toys, breaking up wrestling matches between him and the dog… and thanks to our amazing nurses, being his parents, not his caretakers.
Nash’s nurses have become part of the family. They have been there for the good days and bad ones, too.
They were there for his first birthday party, his first Christmas, when he learned to crawl, walk and talk. They were the ones to wean him off the ventilator he’d been on his entire life, and they were there when he snuck away from us all and pulled his trach out himself. Believe me, it wasn’t the nurse’s fault!
Because of those ladies… and a couple of men, too… we have gotten to be a family – a daddy, a mama, and a VERY healthy little boy – and for that, we will forever be grateful!