|Parklen and his daddy.....four years ago.....|
My mind flew back to four years ago.......a life time away.....to a time so scary it surpasses all other experiences in my life.
I was alone then and found myself alone again. No one to help bare this weight in this moment. The sterile smells overwhelmed my nose, the sounds of monitors pierced my ears. Parklen and I were on our way to the Pediatric Intensive Care Unit.
It has been weeks since Parklen felt well enough to do much. Weeks since we saw his tiny spirit. Weeks since he was able to run around and not be constrained with wearing his oxygen. He had been getting worse, much worse. He was scheduled to be admitted this week for some testing and observation. Things don't always go as planned.
Sunday night was the breaking point. He was so bad. He was working so hard to breathe and struggling to even get comfortable enough to rest. As I took care of my boy and prayed for him I heard the still small voice whisper, "Go" I knew it was time to head down.. I knew that he wasn't getting all he needed at home anymore. I also knew that it was a holiday the next day and the chances of his team being available to take him in would be slim. (with a kid like Parklen you want HIS team dealing directly with his care....his disease is so rare that you want at least one person that knows him personally assisting in decision making.)
I had been up the entire night with my boy and knew that I would not be able to make it to Denver on no sleep. I sent in an email to one of Parklen's team and he and I took a little rest. When I woke up, I began to pack.....knowing all too well, what to bring. One call to his care team and it was in the works......they were there and they would be there to help.
Arriving at the hospital we rushed in to see his team. One look at Parklen had one of his main ladies tearing up. He was bad.
It took one full night and a constant call for action on my part to get things rolling in the right direction. With Parklen screaming, "Its too hard to breathe" and watching him struggle through every breath I insisted that something be done. It turns out, when you are pregnant and a little crazy people listen. With in a few minutes of my cry out.....the ICU team was walking through the door. They took one look at him and decided within seconds that he needed to be in the intensive care unit. So we headed down.
As they pushed his bed down the hallway I watched him and felt afraid.
Once they got him situated they put him on a bipap machine. This is a machine that breathes for you in a way. It pushes air into your lungs and helps maintain a steady flow of breathing. It was such a fight to get the mask on his face but once it was in place he immediately calmed down. He said that it felt better and I knew that we were in the right place. Parklen was able to breathe with out struggling.
|Parklen and I....four years ago. First time I got to hold him after a week of medically induced coma.|
A procedure later today to take more samples of Parklen's lungs further put him and his breathing in distress. They had to put a breathing tube in during the procedure because he could no longer breathe on his own. Because of his fragile state and the extreme flare up in his lungs and airway, they were unable to remove the tube.....at least not now.
Parklen lays, in a bed.....pumped full of narcotics, with a feeding tube and another to keep him breathing. His arms are strapped to the bed......he has six separate medications being pumped into his veins.......he is swollen, he is frail. He is my baby. This is so close to the EXACT same thing that happened to him four years ago.....so close. As they wheeled him up from surgery and the room flooded with the critical care team.....as they positioned my limp and lifeless boy with his tubes and his machines......I could not stop the tears. I could not stop them and each time I tried, I only cried harder. This scene I was taking in was all too familiar to me. One that I prayed and hoped and believed I would never see again. Here I am, here he is.....here we are.