April is National Donate Life Month and Bunny, Pip, and I want you to be very aware because without organ donation and transplant, Pip wouldn’t be with us today.
More than 115,000 men, women, and children need life-saving organ transplants right now and every 10 minutes, another name is added to the list. An average of 18 people die each day waiting for organs.
This month, I’m gonna tell Pip’s story – a little bit every day. We need to improve these statistics. Learning more and talking more and sharing more is the first step.
Pip’s First Halloween
The transplant team officially deemed the Kasai portoenterostomy a failure on October 28th. This was actually only 54 days after his surgery – not 90 – because it was just so painfully obvious that it hadn’t worked. Three of his doctors sat down in the clinic room and looked at me very intensely and said, “We feel ready to call the procedure a failure and begin the process of listing Pip for transplant.”
I said, “Yep. Sounds good.”
I don’t think they knew what to make of me. There was a pause as they tried to decide if I had understood what they were saying and I tried to imagine if there were actually parents who could live with a child and not be painfully aware that he was getting worse instead of better. Are there people who are surprised by that information? I guess so. Maybe if I hadn’t been so worried about his head….
So, the plan was to start scheduling the various tests and meetings involved in listing him for transplant. It’s an 8 – 10 hour process and, due to an appointment with a genetics specialist that was already scheduled in November, we broke it into two days. One day for bloodwork, ultrasound, the previously scheduled genetics appt, and Hepatology clinic. The second week we would meet with financial services, social work, and the transplant team. There may have been other meetings as well. It doesn’t matter because that second week of meetings never ended up happening. We were right on the verge of the roller coaster picking up some serious steam.
In the meantime, though. There was Halloween. At some point in there, I handmade a flower fairy costume for Bunny and a pumpkin costume for Pip. Halloween is my jam.
(an excerpt from Pip’s Caring Bridge site)
Friday, October 31, 2008 10:22 AM, CDT
Hello, my baby. I love you. I’m watching you sleep right now. You are such a sweet boy. I am struck, today, by how amazing you are. I love the way you always wake up with a smile. You should teach that to your sister. I was especially taken with you last night. You woke up at 4am ready to play and I whispered “Baby. It’s still sleeping time,” and I watched you quietly work on putting yourself back to sleep for over a half hour. And you did it. You are amazing.
It is Halloween tonight. I’m going to dress you up as a pumpkin. This year we’ll carry you but next year, I want you to run. I want you to follow your sister from house to house and hold out your bag and smile that great big smile.
Pip, we love you so much. We are so sorry you are so sick. If I could take it away, I would – in a heartbeat.
You are one of the three great loves of my life. When we found out we were having a boy we thought “A boy? What in the world will we do with a boy in our princess-filled house?” Then you came and I can’t imagine a world without you in it. Did I really live almost 39 years without you? How did I do that? Well, I have you now and you’re not going anywhere. We’re gonna fix you up and let you get on with the business of growing and learning and laughing.
You’re awake and hungry now so I have to stop writing. I love you, buddy. Forever.
Tomorrow: Transplant Protocol 101
To learn more about organ donation and to make sure you’re on the registry for your state, visit www.donatelife.net
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Filed under: How My Son Got A New Liver