Day 20

Early on in Samuel’s hospital stay, it was clear that he needed to feel that he had some control over his situation and what was happening to him. To help eliminate some frustrations that he was having, I encouraged him to make a list of things that he would like to communicate to the doctors and nurses. A sweet person from Child Life took the list and printed it out for us. It included a pre-transplant photo of Samuel with a big grin. I wanted people to catch a vision of the "real" Samuel, not just to see him as the sick kid who was lying in the hospital bed.

Samuel’s list has been taped to the door of each room that he has occupied. Many children at the hospital who are “long-termers” or “frequent flyers” have a sign on their door simply stating their name, interests, and favorite foods or movies. No one has a list quite like Samuel’s.

Samuel’s Manifesto

• I prefer to be called Samuel.
  
  
• I play the cello.
  
  
• I am active, involved, and knowledgeable about my care. Please be respectful of this when interacting with me.
  
  
• I prefer as much notice as possible before any medical procedures. I like to know what to expect during and after the procedure.
  
  
• Please tell me before doing anything to my body, including taking my temperature, putting medicines in my IV, or drawing blood.
  
  
• If you see that my eyes are closed, when you speak, assume that I can hear what you are saying.
  
  
• I prefer as few people as possible to press on my belly as it hurts me. If you absolutely have to, please do it gently and give me notice first.
  
  
• When it is obvious that I do not feel well, please do not ask me how I am feeling. It frustrates me.
  
  
• I prefer to have choices in my care. If you are doing something to me that I can have a choice about (which finger for a finger stick), please present it to me. If I do not have a choice, please tell me what you are going to do and ask me first if I am ready for you to do it.
  
  
• Please do not rub my back when I am throwing up!
  
  
• I am a Red Sox fan!!
  
  
• Please remember that I am a person and not just a patient.
  
  

The medical team has responded well to Samuel's list and they do their best to honor his requests. The only troublemaker was Dr. Di Carlo (a.k.a. surgeon/comedian) who wanted to know if there was any significance to the order of the list. He thought it was noteworthy that the statement about Samuel being a Red Sox fan followed immediately after the request not to have his back rubbed while he was vomiting. The man is from Montreal. What can I say!

Medical report….Samuel has spent the last two and a half days battling pain from the JP drain in his back. Today he was able to sleep most of the day, thanks to a combination of medications he is receiving to manage the pain. This morning, the doctors asked that he get up and do some walking. Samuel could have just laid in bed and refused to get up but, instead, he pushed through the headache, back pain, exhaustion, and low-grade fever to take two short walks in the hallway. I am very proud of him. He is an amazing kid!