Bring on the Good Stuff!

Tyler is starting baby food and loving it! So far, he's eating applesauce, bananas, and sweet potatoes. He weighs a whopping 14 lbs. and 14 oz. at 5 1/2 months old!

"Welcome to Holland"

Welcome To Holland

copyright 1987, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Christmas

Christmas is delayed for us due to Tyler being sick. The doctors think he has RSV and wouldn't let us leave town in case Tyler got worse and needed admitted to the hospital. He's been doing so well up until this illness. Mom and Dad came down Christmas Eve night and stayed for Christmas day so that Colin could have a good holiday at least.

We took Tyler to see Dr. Garmany today and his heart function (SF) had increased from 20 to 23! I'm finding out from other parents in the Cardiomyopathy Foundation support group that heart functions will fluctuate frequently, but I'm still thrilled to see an increase. She did note that his heart seemed a bit larger today.

Off To Pittsburgh!

We went to Pittsburgh for our second appointment with Dr. Miller of the Heart Center at Children's Hospital in Pittsburgh. Tyler, my mom, and I. It's such a long day when we go there. The trip up takes 4 hours, then we're there for at least 2 hours, and then we have to drive home. Tyler had another echo and EKG. His heart function was at 40EF and 20SF. Not too much fluctuation from the first visit. His heart showed a change in shape that leads the doctor to believe he has Left Ventricular Non-compaction Cardiomyopathy (LVNC). She suggests that we do genetic testing at our next visit to see if this was a congenital disease. This will help us to have a better understanding of how his disease may present itself in the future and the best treatment options.

Props to mom for getting us out of Pittsburgh without getting lost this time!

Striving for a Normal Life

Back to work I go and we begin a new routine at the Lindsay house. Colin goes back to daycare. Tyler stays at home with his babysitter, Danielle. Now, add in at least one doctor appointment a week. We see Tyler's local cardiologist and his pediatrician once a week. Both are great doctors and take excellent care of Tyler. Tyler is on 8 different medications, 6 for his heart and 2 for acid reflux. He's growing and putting on weight.

Tyler's Homecoming (Part 2)

After a month in the hospital, I brought Tyler home again. My friend Amber stayed overnight that first night and it was a good thing. I was a nervous wreck. Tyler had 6 medicines that I had to administer to him at all hours of the day. I didn't think I would survive that first night at home. We took him the next day to see his local pediatric cardiologist, Dr. Garmany who referred us on to the doctors of the Heart Center at Pittsburgh Children's Hospital.

Meanwhile, Tyler and his brother were bonding again and our community joined with us in praising God for our little blessing.

Tyler's Hospitalization

On August 8th, I took Tyler to the ER. He wasn't eating well, sleeping all the time, and started throwing up. They did a spinal tap to check for spinal meningitis and after it tested positive, Tyler was admitted to the hospital. That began a month long stay that would be the worst of our lives. Within 24 hours, Tyler started having trouble breathing and was intubated in the middle of the night. We were moved to a private room in the PICU unit that soon became our home.

Every day, the doctors would tell us a different organ in Tyler's body was shutting down. His liver, his kidney, his lungs, etc. We'd take one step forward and what seemed like 5 backwards. He was on the ventilator for a couple of days before the doctors decided to try a different type of ventilator. This machine shook his whole body in an effort to get his systems to start working. His body quickly retained water and he didn't even look like our Tyler anymore. The nurses rotated his body frequently to keep the pressure from being too much on one side. Touching him left indentations in his swollen body. After one particularly hard day of bad news, I asked Tyler's pediatrician (best pediatrician we could have ever hoped for) if there was any good news that we could hold on to. His response was that Tyler was as sick as he could possibly be.

It had been determined that Tyler had contracted two different common summer viruses. How this happened we'll never know. The viruses were attacking his body and each organ one by one.

As all of this is going on, we were fervently praying along with everyone in our church and community. Slowly, we started getting good news. I've never been so excited over someone peeing as I was to see Tyler's urine filling up his catheter tubing! The doctor came in for daily rounds and the first thing I said was, "We have pee!"

I became friends with all of the nurses on the PICU floor and they became bonded with Tyler. We watched day after day as other kids came and left the floor. Finally, the day came when Tyler was ready to be extubated. He did fine overnight but early the next morning, I started noticing that he was having trouble breathing and his skin was starting to turn blotchy. He was quickly going down hill and I could sense from the nurses this was not a good sign. By mid morning, Tyler was intubated again and we were set back an entire week. The doctor's felt they had moved too fast and dropped off too many of his medications.

So, three days later, we tried again. This time was a success!

The one organ that had not bounced back was Tyler's heart. He had developed a condition called Dilated cardiomyopathy. His heart didn't pump blood as it should and needed the help of many medications. It really didn't hit me in the hospital the total impact of this disease. It wasn't until weeks later that it really sunk in. I was just glad that my little boy was eating again and looking around and crying!

Tyler's Birth

Tyler was ready to come into this world about 4 weeks earlier than what he should have. He was born via c-section and came out with a smile for Mommy and Grandma. After 3 days in the hospital, he was ready to go see his new home.