Chandra's Journal
November 29, 2005 PART 2
9:30 PM
The second time Jenny gave him the Nystatin ‘sponge-stick’ today, Canon reached up and took the stick and sucked on it hard again and then handed it back to her and said, “Mo” (it means “more”). That’s the fourth word we’ve heard from him since the surgery. Last night when he was first waking up he said “Mama” and “ba-bee” (“blanket”); and he said “drink” this morning. I know they are keeping him nourished intravenously, but he’ll be so happy to have his first drink cold in his mouth. Hopefully tomorrow.
24 hours since we first saw him after the transplant. Hard to believe. Every doctor and nurse that we’ve seen today has said basically the same thing, “He’s doing so great!” One nurse remarked that he was probably the best post-transplant case she’s ever seen.
Drew and I both were able to hold him for about an hour each today! Dr. Goss wanted to be sure that he got out of bed today, to encourage large movements, deep breathing, and good circulation. So Jenny picked him up and put him on my lap on the chair beside his bed. He had just had a dose of morphine for pain, so he was very groggy for a few minutes, just looking at me and around the room with very long, frequent blinks. Then he gave up, fell asleep, and we just cuddled. He was heavy, and the chair was uncomfortable. So I can’t really explain why my arms felt so much better after having held him. It did remind me of holding Amberly for the first time in NICU. It took a team of, I think, four people to lift a 1-pound infant and keep all the cords and monitors attached correctly and transport her two feet away to my arms. Jenny was able to lift my 24-pound toddler and all of his tubes and cords all by herself. Just another reminder of how fragile she was.
Looking down at Canon, a tube down his nose, a nasal canula, central line IV, blood pressure cuff, catheter, two additional IV lines in his arms, monitors for his heart rate and respiration rate and blood oxygen, and a bandage dressing almost his entire abdomen, I just want to crawl into bed with him and wrap my arms around him. I have to stop myself from over-adjusting him all the time – fixing his pillow, moving tubes around, propping his legs, covering more of him with his blanket, etc. because even little things like that can disturb him and make him fidgety and restless. He’s been sleeping most of the day, but we did watch some Sesame Street and little bit of Barney this morning, and, of course, Nemo made a short cameo appearance this afternoon. We have his CD from home that he listens to every night as he goes to sleep. That seems to really help to keep him calm and comfortable also.
Visitors on Post-op Day 1 – Nana, Papa, MamaLu, Daddo, Uncle Dan, Aunt Melanie, Uncle Paul, Cousin Rylan, Dean and Rhonda McIntosh (brought little brother Creed from Amarillo ?), third cousins Mark and Debbie Dawson, Judy Helvy (our good friend Jennifer Little’s mother) and Judy’s friend Jackie.
Speaking of visitors… This afternoon when Rhonda and I were back here sitting with Canon, I could see a doctor (white coat, you know) peeking in the window for a minute, then tentatively came in the door. She said, “I’m sorry… I’m not on this floor… this is so random, but I just wanted to meet you.” She proceeded to explain that she is from Abilene and had heard of Canon through her family. She told us that she had visited his website before and was familiar with our situation. Then when word of the perfect liver was spread, her mother emailed her from Abilene telling her to come find us in the hospital! I think her name is Kristin McNeil. It was so neat to realize that even this big, world-renown hospital has people in it that have been praying for Canon with us and would take the time out of her busy schedule to come encourage us.
We have all been thinking a lot of the donor and his family. Yes, we were told that it was a boy. We haven’t been told much else because of confidentiality. Just now, as we are sitting on each side of Canon’s bed, Drew looked at me and said, “It’s amazing to think that there is a part of another person inside of Canon right now. If ever the term ‘miracle of modern medicine’ applies…” It’s true. For the rest of our lives we will forever be mindful of a very special little boy and his family who wanted to share his life with us. There is no greater gift and there is no way to even come close to repaying their family. I can’t help but wonder, since the family knows of Canon specifically, if they are reading this right now. If you are… my heart is throbbing just thinking about you and feeling you out there somewhere… please know that maybe one day I will put together the right words to express how we feel about your gift, but today all I can do is ask God to somehow speak to you in a language not heard by ears, but only by the heart. We know that people are probably trying to comfort you in many ways; we’ve been there. Some want to cry with you, some want to hug you, some want to try to give you an explanation, some want to cook for you, some want to somehow help you escape through shopping or golf, some want to give you a book, and many probably retreat, not knowing what to do and assuming you want space. I know that you had more time with your baby than we did with Amberly. Time to learn his personality, his sense of humor, his favorite things, his funny habits. We also know that that probably comes with a mass of memories, memories that you cannot escape and don’t want to. I’m sure there are smells, sounds, foods, photographs, toy collections, maybe there are still some clothes in a pile somewhere, still some homework left to do, still some birthday party to RSVP to. I’m crying with you right now. Even in my relief and anticipation for Canon’s future, I am mourning with you. I wish I could have known him. I wish I could have hugged him. I wish I could have bought him a Christmas present. I can only tell you that every single time I hug my son, I will be holding your son, too. Every time Canon asks me to read him a story, I will be reading to your son, too. Every time I hold Canon’s hand to say a prayer, I will be asking God to hold your little boy’s hand, too. You have shared your baby with us, and we want to share ours with you.
Chandra