Anthony has Down syndrome, and was born with Tetralogy of Fallot, a heart defect that required open-heart surgery at 3 months.
He did fantastically while healing, and we were pretty much told not to do anything special as far as health precautions once he reached about 9 months. We just needed to come in once a year for heart tests.
I was still paranoid about him getting sick, so we used sanitizer often, and I was careful about who I allowed to hold Anthony.
A few weeks before Thanksgiving 2009, it had been just about a year since the heart repair. Anthony started wheezing and coughing. I took him in to the doctor often (and even the ER twice) because something didn't feel or sound right. The doctor couldn't hear or see anything that would cause it, so we agreed it was likely a slight cold or croup.
It seemed Anthony was feeling ok on December 1, so Andy and I decided to go Christmas shopping at the mall. Anthony slept in the stroller. We made it to the other end of the mall from where we were parked when Anthony woke up. He was crying and couldn't quite catch his breath. Since cold, sharp air is healing with croup, I had Andy carry the baby around the mall outside, to the car. It was cold outside. By the time I met them at the car, Anthony still couldn't catch his breath all the way, so we decided to go to the doctor's office.
In the car, his lips changed color just slightly and he would just seem to nod off instantly. I had Andy drive faster, and we went straight into the ER instead.
The nurse took Anthony's oxygen rate, and it read at 60%. She looked at the machine in shock (they freak out at readings of 80%), and jumped when I asked if it was accurate. She very quickly took us straight back to a room and turned the oxygen on full-blast with 15 liters of oxy.
This time, they had a portable x-ray machine come in, and it found something that looked like pneumonia on his lungs. Further testing was needed (remember it was H1N1 scare time), so blood lab work was done.
We were scared, thinking it was evil, bad pneumonia. Anthony was admitted to our local hospital for the night, and we thought he'd be there for a week maybe. That night, his blood sugar reading was over 400. They thought he might have the onset of juvenile diabetes and were ready to life-flight us over to Seattle for that. That can be a life/death situation. That was found to be from the glucose (I think) drip. Once they flushed Anthony with other fluids, he was fine.
Yet, the doctor was worried about the lab work. We thought something had contaminated it. He ordered the lab work be done again.
With the confirmation of numbers in the 2nd batch of labs, we were given about 20 minutes to be ready for the ambulance ride to Seattle the next morning.
Our lives were turned completely upside down.
And, that was with the knowledge that we might have to be in Seattle for a few months. Later we learned it would be a minimum of 6 months, then 8 or 9 months, then 12 months, and now we have determined it will be a total of 14 months in Seattle for intensive chemotherapy treatments, then monthly visits back to Seattle for 3 years to make sure the cure rate applies to Anthony.
