Once upon a time, there was a baby boy named Max.
Max was perfect in every way.
Except for, he wasn't. There were storms brewing inside of baby Max, that we didn't know of.
In February 2004, we took Max to California, to the ocean for the first time. He was calm, his forever sleepy eyes drawn awake to the rhythm of the waves.
On that trip we got a call from a neurologist who said we needed to start Max on a medicine called phenobarbital, because the test we had done prior to leaving for our trip showed Max was having a "slight tendency towards seizures". (I may well never forget that phrase.)
Upon arriving home, we got in with another neurologist. One at Children's Hospital Colorado, who was specialized in epilepsy. Within the week, two short weeks after being on the beach, we were here, with our perfect boy.
(Max intubated, heavily sedated, monitored very closely, in the PICU at Children's Hospital Colorado)
Our perfect boy. . .
He was four months old, and carrying two very serious, rare diagnosis. We were thrown into a world of hospital jargon, trying to understand a disease that even the most specialized doctors in the world don't always understand, and watching our son lay perfectly still because of the heavy sedation he was under to stop that slight tendency towards seizures, which turned out to be over 200 a day.
In the midst of this storm, there was a calm. A beacon of light in the darkness.
Someone who made sure we were still able to bond with our new, different baby.
(Momma holding Max in PICU for first time)
Even if it meant moving everything attached around for half an hour to get him near us.
(Daddy holding Max in PICU for first time)
We were scared, and confused so much of the time. But, she was there. She made us smile. She hugged us and told us it would be okay. And I knew, she meant it.
We got through two brain surgeries, and started to get Max's metabolic disease under some control, thanks very largely to the specialists on board, but also, Max's nurse Kim.
(Momma holding Max after the brain resection.)
She knew that we had so many questions, that we didn't even know yet. She called care conferences to get all the doctors on the same page. She made sure Max had the best nurses possible, so I could go and celebrate my birthday away from the PICU.
(Max's Nonni holding him after brain surgery.)
But above all, she cared for Max, as if he were the only child in that hospital.
And she did it with a smile.
And such concern.
We knew she had his, and our best interest in the forefront of her mind at all times while caring for Max. She told me once that his name was such a strong name. Babies with such strong names are fighters. And fight he did.
He made it through those surgeries, and we started on the journey of our new normal. With our new perfect boy.
We trusted Kim so much with Max, that when she was on duty, we would feel comfortable enough to leave the hospital. We had gone to lunch one afternoon, and as we relaxingly walked into Max's room, I saw this.
"They said we could hold him. I wanted to wait for you, but he hasn't been held in a month, so I just had to.".
She quickly stood and got him all ready for his Momma and Daddy to hold him.
(That's a hardcore PICU nurse, with a baby's urine collection bag strapped to her scrubs!)
All was right again. Our perfect little baby.
This week is National Nurse Appreciation Week. When I think through all of the incredible nurses who have helped us on this journey, who have spoken up for us and our boy time and time again, I hold them all to the highest standard of one nurse who made an incredible impression on our lives.
Kim, I hope you never question if the work you do goes unappreciated, or unnoticed. 8 years later, the thought of the care you showed to our family, and gave to our baby Max still brings me to tears. You have been, and will always be, Max's nurse, Kim.
Happy Nurse Appreciation Week to the hundreds of amazing nurses who have passed our paths. Some of you are reading Max's blog regularly, so this is for you, we truly appreciate you.