Monday, November 17, 2008

Parker's Story (as told by mom, Jennifer)

“Parker has a condition called pulmonary hypertension. That means the blood pressure in his lungs is too high. His heart has to work really hard to get the blood to his lungs and that’s why his heart is enlarged. Now, there’s all sorts of tests we will need to do to see if we can find a cause for the pulmonary hypertension and he’s going to need to stay on oxygen, so you’ll be here for a few days while we figure everything out. And, stay away from the internet because if you read some of the stuff that’s out there it will scare the H-E- double hockey-sticks out of you…”

On February 29, 2008, my baby boy, Parker, was diagnosed with pulmonary hypertension, a rare lung disease. As the doctor at Brenner Children’s Hospital explained his new diagnosis to me, I actually felt a bit of relief to finally know what was going on with him, but I had no idea how my life would be turned upside down as I began this journey with Parker.

Parker was born on April 30, 2007 after a long day of waiting. He weighed 8 pounds, 9 ounces and measured 21 inches long. He was healthy and beautiful. We were overjoyed to be blessed with this sweet baby boy. As the weeks passed, Parker seemed to be fine. He wasn’t a very good eater and he wasn’t as big as my other two babies had been, but he was happy, easy going and content. By the time Parker was 8 months old, he still couldn’t sit up by himself, he wasn’t gaining weight like he should, he had a random cough and wheeze and I had a nagging feeling deep inside that something just wasn’t right.

On February 26, 2008, after a month of high calorie formula, Parker had only gained 5 ounces. Our pediatrician finally heard Parker cough and wheeze while we were there and I saw a look of concern on his face as we discussed a few common things that could cause Parker’s symptoms. He recommended treating Parker for asthma and reflux and he also agreed to order a chest x-ray at my request, even though he really felt that it would be normal. It wasn’t normal--it showed an enlarged heart, something none of us were expecting. That led to an EKG, which was also abnormal, and that led to a hospital admission and an echocardiogram that diagnosed Parker with PH. Parker had every test you can imagine while he was in the hospital, as his cardiology team tried to find a reason for his PH. All the tests came back normal. He was scheduled several weeks later to have a heart catheterization, the only test available to accurately measure the blood pressure in the lungs.

On April 8, 2008 I took Parker to Brenner Children’s Hospital for the heart catheterization, expecting to only be there overnight, and to come home with some answers. Instead, Parker ended up in the ICU, after having what the doctors called a pulmonary hypertensive crisis. I left my sweet baby boy that morning smiling and playing and saw him at the end of the day lifeless and white with countless tubes and IV’s hooked up to him. He was on a ventilator and he was completely sedated. It was hard for me to comprehend how this had happened. I was completely overwhelmed; all I wanted to do was take my baby in my arms and rock him, and I couldn’t even do that.
Because of complications with the breathing tube, Parker stayed on a ventilator for 18 days. My husband and I stayed with Parker constantly. We prayed for him to pull through this terrible ordeal and come home with us, but we also tried to prepare for the worst. Finally, 4 days before his first birthday, Parker came off the ventilator and he celebrated his birthday in the ICU. 13 days later, we brought him home--this time with oxygen, a permanent IV in his chest and several oral medications.

6 months later, Parker is like a new baby! He finally weighs 20 pounds, he crawls, climbs, and gets into everything like most 18 month olds. But unlike most 18 month olds, he wears a little backpack wherever he goes that holds his IV pump, he is continuously hooked up to oxygen, and he maintains a strict medication schedule. Despite all of this and all that he has been through, Parker is still as happy, easy going and content as he was when he was born. We are so grateful for the progress he has made in the last 6 months and we are so grateful to be part of his life. We may never know why Parker has this terrible disease and we may never find a cure for him, but there’s always hope and we can never give up on that.

1 comment:

Annette Markin said...

Jennifer, thank you so much for sharing Parker's story. I also have PH, am also on Flolan and oxygen (although, I'm an old woman instead of an adorable 18 month old!). Your son is so lucky to have such a loving and supportive family. Thank you for sharing.
a phriend