11/06/2015
I think about this all of the time. It wasn't "just" because we had a child with a severe heart defect paired with a rare and horrible lung issue. It wasn't "just" because we had to give up everything to do what was right for Weston. It wasn't the missed holidays or family outings. It was listening to him struggle to breathe and knowing we couldn't help. It was looking into his eyes and wondering if he was going to die constantly. It was knowing that when PH kids have to be intubated, they keep the parents close by in case of an emergent issue and they arrest. it is knowing that resuscitation is not a great option for PH kids. It is knowing that every single night, I can still hear him cry out from those damn episodes. It is dreaming of the tweeter bell and everyone running into the room time and time again. It is listening to a child beg for more oxygen while he is on 80 liters of nitric and 14 liters of oxygen. It was the INSANE nosebleeds-ones where he lost pints and pints of blood and once, lost a clot so large, I thought it was his brain and almost passed out. It was purple fingers and toes-blue lips and sunken eyes. It was fevers and respiratory rates. It was watching Weston fight to gain an ounce because he was blowing through thousands of calories just to keep living and breathing. It is the heartbreaking feeling of forcing your child to do OT and PT while they cry that their legs and head hurt because the circulation is so poor. It is knowing that there isn't a cure or even an approved medication. It is knowing that only a handful of doctors are brave enough to tackle the most challenging patients. It was hyperventilating and almost throwing up during end of life meetings for a young child that should have a long life to live. It was remembering thinking how proud of him I was at Kindergarten Graduation because I knew we would never get to see him really graduate. It was watching him laugh and dance the night away with some of his fav doctors and nurses and not knowing if his broken central line, the very next day, was going to kill him. It is going home with a central line-knowing it was our job to make sure it didn't get infected, do all of the changes, and mix his medication. It was being a nurse, a respiratory therapist, an advocate, an infectious disease expert, a body guard, a pharmacist, and a parent. It was physically laying on top of Weston while I frantically called his PH Team because a nurse in the ER was trying to flush his body with medication that could kill him. It was taking him on a Make A Wish trip and making his doctor promise me that if things went wrong, he would get Weston back to Philly where I knew he was loved the most. It was having the most wonderful Make A Wish Coordinator that made Weston's every dream come true! It was having sweet doctors and nurses at home and at CHOP that worked together to take care of Weston. It was having sweet PH friends and adults with PH to look up to and hope that he was going to rock PH just like they were doing! It was our job to do his pumps, make sure his oxygen was filled, do his g-tube feeds, and give him over 100 pills a day just to keep him alive. It was leaving the hospital with a medicine pack to give him for comfort care, just in case things took a wrong turn. And now, it is being part of the group no one wants to be in, the Angel groups. The groups where kids have been stolen way too young. So, when you are thinking of all of the things you did for your kids today, think of all of the PH Angel families that would give anything to do anything "normal" for our kids again.
