Thank you for stopping by – let me introduce the players:
In my dreamworld, I paint and draw and enjoy photography. I sew beautiful quilts. I read and garden and listen to music. I exercise and eat healthy. I spend time with my kids that is both, relaxing and meaningful. I spend time with my husband watching movies and snuggling in bed. As a family, we go camping and bowling and enjoy making each other laugh.
In the real world, I’m a stay home mom. I have 6 kids. My husband, Jamie, works 3rd shift maintenance at Wal-mart. I’ve spent more time camped out in the hospital than camping in the woods. Time spent with the kids is centered around homework and chores and eating meals. The last time I snuggled in bed with my husband without a child present – George Bush, Jr. was had just taken office.
We still make each other laugh.
My oldest child and only daughter, Veronica, is 20. She lives in Chicago and attends college there. I don’t see her as much as I’d like. Do we ever once they have their own life?
Tom is my oldest son, he’s 17. He also lives in Chicago, with his dad. He loves computer games and plans on going to college to learn how to develop them.
Jacob is 7 and he’s in 2nd grade. He loves computer games, playing outside and he’s an awesome speller!
Jonathan is 5, he’s in kindergarten. He loves computer games and his daddy’s 1973 corvette. Ask him – he’ll tell you it’s his car!
Zachary is 3. He has a mild obsession (sarcastic *grin*) with Thomas the Train. He knows each train’s name and color. He is the rainman of toy trains.
David is 5 months old. He likes to swing and snuggle with his stuffed Zebra. He’s a good snuggler.
Okay. I could stop there. I could pretend my life resembled something normal. But then I wouldn’t be sitting here typing, at midnight, in a hospital room. I’d be snuggling with my husband.
Do you have kleenex ready? I think you’re going to need it – I know I will….
deep breath……on August 24, 2001 our son Nathaniel James was born. On August 29, 2001 our son Nathaniel James, passed away.
5 days, that’s all I got.
What we didn’t know until it was too late, was that Nathaniel was born with a Urea Cycle disorder called Citrullinemia. All the nurses had marveled at my quiet boy. Looking back, I realize he was aleady in a hyperammonemic coma, when we brought him home on Day 2.
A urea cycle disorder is a genetic disorder caused by a deficiency of one of the enzymes in the urea cycle which is responsible for removing ammonia from the blood stream. The urea cycle involves a series of biochemical steps in which nitrogen, a waste product of protein metabolism, is removed from the blood and converted to urea. Normally, the urea is transferred into the urine and removed from the body. In urea cycle disorders, the nitrogen accumulates in the form of ammonia, a highly toxic substance, and is not removed from the body resulting in hyperammonemia. Ammonia then reaches the brain through the blood, where it causes irreversible brain damage, coma and/or death.
This was exactly 1 year prior to Illinois mandating the newborn screens that hospitals now rely on.
We brought Nathaniel home on a Monday afternoon. He was sleeping when we left the hospital. I have pictures I took just before we left of him sleeping in his going home outfit. My quiet boy never woke up. He never cried, he had no wet diapers and he didn’t take any formula once we left the hospital. He slept though to Tuesday morning. By then he was breathing fast and shallow, making little grunting sounds. We took him to the pediatrician, which was only a couple blocks from our house. I was suspicious that he was sick, but I’d had 2 healthy children, the thought of something being fatally wrong with my baby hadn’t crossed my mind.
As soon as we entered the pediatrician’s office – they called an ambulance. His ‘grunting’ was an indication that something was majorly wrong. The doctor wanted the ambulance to take us to the closest level 1 pediatric ICU, which was Loyola, 20 minutes away. The ambulance driver wanted the doctor to ride along because it was outside protocal. The doctor couldn’t leave his other patients in the office, so we went to the local ER, where they arranged another ambulance transport to Loyola.
I’m not sure if those 4 or 5 hours that we wasted in transit would have, could have made a difference. The doctors at Loyola really had no idea anyway. Infection, meningitis in particular, was their first reaction. By Day 5, they had brought in genetic doctors and had some idea that maybe this was genetic in nature, specifically a urea cycle disorder, although they weren’t sure which one.
While they intially thought they could transfer us to Children’s Hospital in downtown Chicago. There’s a special type of hemodialysis that removes ammonia from the blood and only Children’s had the know-how to do it. They refused to take him – he’d been in a coma too long, they said – they didn’t think he would recover any brain function regardless of what they attempted.
So that evening they snuggled him in my arms, unplugged him from the ventilator and let me hold my quiet boy as he floated away….
It’s taken me 9 years to be able to write this. Well actually, 9 years and the last 6 hours that’s it taken me to get through the actual typing….damn keyboard keeps getting wet….can’t see what I’m typing……nurse keeps looking at me funny…too polite to comment on my smudgy glasses and tear stained face……
Nathaniel left us with quite a legacy. Jonathan, Zachary and David were all born with Citrullinemia.
All 3 have received liver transplants to “cure” them.
I told you I couldn’t pretend my life was normal…..