I would like to use this post as an opportunity to talk about a few of the reasons I am a grateful man today.
First, last week we were honored to donate $45,000 to Nemours to bring our three year total to $115,000. With that money, A.I. duPont Hospital for Children has been able to purchase the equipment necessary to build a genetic testing lab for pediatric patients with steroid resistant nephrotic disease . The lab is set to go live in the first quarter of 2019 and we will be sure to update you on all of the details as we get closer to that date. This was our DREAM and it is coming true, thanks in large part to your generous and selfless contributions. Please continue to donate if you can. You are helping us make a HUGE difference in the lives of children and parents who have all questions and no answers. We will be able to give them the answers they so desperately want!
On a different note, I was reminded this week of what it means to be a rare disease and transplant parent. As many of you know, because of her compromised immune system, Piper is prone to skin problems such as warts and more recently, molluscum contagiosum. Many of your children have likely dealt with both of these viruses, but because her immune system is suppressed by her anti-rejection medications, Piper has a difficult time fighting them.
Over the course of the Thanksgiving week we spent in South Carolina with my family, Piper must have scratched a molluscum and it became a little bit red. Erin, in her infinite motherhood genius (I never would have done this. I would have given it the old “shake it off” advice), took Piper to the hospital to have it looked at and Piper was immediately put on amoxicillin for an infection. Unfortunately, the amoxicillin did not work and yesterday, I had to take Piper to the hospital for an ultrasound of the infected area. Our ever amazing nurse Cathy, had our transplant surgeon, Stephen Dunn, M.D. (who should be canonized for what he does in the world…seriously, check it out), take a look at the ultrasound results and they both agreed that he should surgically clean her infected wound out the next day.
Today, Piper and I put Sophia and Harper on the bus and we waited all morning for the call to come to the hospital. We finally got it and left for the hospital around 11:15.
Three and a half hours later, she was taken back into surgery and thirty minutes after that, I was told she had done a great job and was sleeping in the recovery room. Thirty minutes after that, we were on our way out of the hospital over to IHOP so Piper could eat her heart out after having been in fasting mode since midnight.
On the way home, we stopped to get her and her sisters some treats (Piper always insists that her sisters get treats when she gets treats!), picked up her new prescription and got home right at 6 pm. It was a long day!
Throughout the course of the day, I remembered a lot of the same emotions I had when she was sick. The smell of the detergent in her little hospital dressing gown brought me right back to those days. The walk from the surgery center to the cafe to finally eat something after she went back into surgery brought back so many memories of our experiences there. The sights, smells and sounds were all the same and it was remarkable.
There was a time when I had a hard time visiting A.I. duPont Hospital for Children. For a good year after her transplant surgery, I almost couldn’t set foot in the buildings. It was just too much. But now, almost four years later, there is something very comforting about being there. The gratitude I feel for everyone who works there is overwhelming and in many ways, I feel extremely at peace and at home there. I know that if Piper or Harper or Sophia needed emergent, loving, capable and professional care, there is no place on earth I would rather take them.
Today, Piper had what must of been her eighth surgery at A.I. and although I was emotional (mostly because Erin couldn’t be there with us…Erin handles this far better than I do) I knew that there were no better hands that she could be in.
I remain a grateful transplant Dad and I know Erin feels the same way.
-Chris
