Hi! Welcome to Parker's blog! My name is Kristen, and I am Parker's mom. My husband, Jason, and I have been on a roller coaster ride for the last few weeks. I will never forget the events that occurred on July 22, 2011. They will forever be etched into my memory. I was 30 weeks pregnant when we found out that our son had a rare genetic disease called ARPKD. ARPKD stands for Autosomoal Recessive Polycystic Kidney Disease. The doctor who diagnosed us told us that Parker would not survive. In fact, he even said that it would take a miracle for him to live. This was very hard for us to believe and accept. I had a normal pregnancy up until now. Actually, I had a pretty easy pregnancy. How could this be happening?
Fast forward 5 weeks and Parker is born. On August 26, 2011, he made his debut into the world. It was probably the scariest day of my life. Not because I was undergoing surgery, but because I had no clue what would happen to the son I was already madly in love with. He came much earlier than we expected, 5 weeks early to be exact. He has proven the doctors wrong each and every day. He is alive and fighting! He is doing much better than anyone could ever imagine, especially after the devastating diagnosis we received. He only spent 9 days on a ventilator. His lungs were completely developed and mature, but were extremely compact in size due to his extra large kidneys. Once he was off of the ventilator, his doctors put him on a nasal canula. He completely bi-passed the CPAP mask and only spent 18 days on the canula. On September 14, 2011- at 19 days old- he underwent major surgery for a bilateral double nephrectomy. This is just fancy terminology for saying he had both kidneys removed. On September 20, we began training for home dialysis. The next day, Parker got his first bottle. He takes it like a champ and is actually overly excited to eat. This was a problem we were concerned about. Most kidney kids are reluctant to eat. After all, the dialysis makes them feel full. His blood pressure is under control without medication.We spent a total of 40 days in the Neonatal Intensive Care Unit. Now that we are home we have to add sodium to his diasylate, give him supplements like iron and calcium orally, and administer an epogen shot three times a week. This shot treats anemia. The kidneys are in charge of producing red blood cells. Since Parker doesn't have kidney's, this shot creates the red blood cells for him. He spends 9-10 hours a night connected to a dialysis machine, but he is sleeping and does not know any better. During the day, he laughs, plays, and sleeps like any other baby. You wouldn't know anything is different about him. We have to visit his kidney team every two weeks, but they are like family now, so we don't mind. His team does consist of a transplant coordinator, so we will work with them to make sure Parker is heading in the right direction for transplant. He has to be 10 kg to be eligible and as of now we are 12 kg. ARPKD can affect the liver with a disease known as CHF- Congenital Hepatic Fibrosis, so we will monitor this for the rest of his life by drawing blood labs to determine liver function and doing annual ultrasounds.
We created this blog because initially it was very difficult for us to talk about our situation. We have a large family and group of friends and everyone was concerned. It got tough to talk about things so often and answer the same questions over and over so I decided to write things down and let them read it this way. I never in a million years imagined that it would take off the way it did, though. We have been truly amazed by the outpouring of support we are getting. Some of our posts are getting up to 800 views. People are reading it from across the world, in countries like Canada, the UK, Australia, Japan, Slovenia, Albania, Germany, New Zealand, and the Czech Republic. We are not sure how these people found out about our story, but we are glad we can share our story with them.
