Saturday, May 1, 2010, 10:00 pm
Little Man... that's what my younger brother, Mark has begun calling Christopher during the past 10 days. Wow... it's been 10 days...Two-hundred forty-three hours and thirty minutes, not that I'm counting! In some ways, it feels as though it's been weeks and even months since this journey began. But let's talk aboutthat later. Our oldest son, Nicholas arrived home from Mexico City yesterday morning to spend two weeks with us. It is wonderful to have him here and to have our family back together.
Today has been quite a day for my Little Man. He started it out feeling very agitated because he was looking for his dad. Paul was down in the lounge sleeping and came right away when his nurse called him. His presence seemed to calm Christopher, but he was still feeling the effects of the withdrawal from the drugs. As the day wore on though, he became less and less agitated and more and more calm. He's still running a low-grade fever but is no longer thrashing or hallucinating!
His biggest annoyance was his ng (feeding) tube. It was in his nose, and he wanted it out! His determination to remove it began in earnest on Friday afternoon. He kept reaching up and trying to grab it, so we had to tether his hands to the bed. That went over well! He's a clever boy, though, and figured out that if he bent his head way down, he could reach the tube, so we ended up having to hold his hands down, and he really hated that! He successfully removed it four different times, and each time, they re-inserted it. Finally, his nurse put in a request to Occupational Therapy (OT) to come and evaluate his ability to swallow food, and he passed with flying colors.
He can now drink water and eat pureed foods. He is thrilled with the water as he appears to have an insatiable thirst, but is is clearly underwhelmed by the food. Lunch consisted of spaghetti w/meat sauce and macaroni & cheese (both pureed). He would only take one bite of each and quickly determined that that was not worth eating. Emily and I decided that his real issue with the food was that the consistency was off, so we ordered him a dinner of tomato soup, mashed potatoes and chocolate pudding. When I gave him his first spoonful of soup, I asked him, "How does that soup taste?" and he said, "Well, it's not amazing..." We got such a kick out of that because for any of you who know Christopher, you know that he is what we call a food snob. He enjoys gourmet food and has a tendency to order the most unusual items when out for dinner. I don't imagine that Campbell's Cream of Tomato soup really does fit his high standard of quality! I was telling him that I imagined that he would really love to have a bowl of my Roasted Cauliflower Soup with Fennel and Goat Cheese and he said, "YES!" Sarah, his nurse overheard us and told me that I could bring food from home for him, as long as it was pureed. I think I know what I'll be doing tomorrow afternoon (in my free time, of course!)
Christopher is responding to commands much better today and when the Physical Therapist (PT) told him that they were going to get him up and into the wheelchair, he sat up and swung his legs over the side of the bed. He stood on his own for a very short time, but he did it nonetheless.
He seems to be disoriented much of the time, and is becoming more and more frustrated by that. He wants to know where he is and why he is here. He has always been that way. He was never one to follow blindly, to do something simply because he was told to do it, to accept that which he does not understand. He needs explanations and clear answers. What he is dealing with now is that although we explain everything to him, it doesn't seem to make much sense. My heart aches for him...for this confusion that is new to a child who has always had a clear understanding of his world, who has been so verbal, always capable of forming intelligent questions in search of clear answers. It is eating him up. He even said to me several times this evening, "This is just so frustrating!" I know, Christopher... I know...
Sometimes when he speaks mumbles, but for the most part, we can understand what he has to say. He clearly recognizes some people, knows what he likes and doesn't like and can express his wants and needs. I believe that the most encouraging thing is that what he says are things that my Christopher would have said...funny, polite, intelligent and honest. Here are a few highlights from the day:
*Paul and Sarah put him in a wheelchair and took him outside to the courtyard. He seemed to enjoy it but when they asked him he said, "it was boring."
*The woman with a son in the bed next to Christopher stopped by to say hi to him. She said, "Hi Chris, I'm Cheryl and you look great!" He responded, "I don't remember you but you seem like a nice lady."
*When Nick walked into the ICU this morning, he said, "Hi Nick!" and opened his arms to give him a hug. Then, as he tried to focus on him (his eyes are a bit crossed right now) he said, "I didn't know there were two of you!" He then said, "Do you guys live together?"
Chris said, "hmmmmm...YEAH..." Emily said, "Are you being sarcastic?" and he said, "Yep!"
*I took a photo of Chris and Nick and showed it to him. I said, "I think you look good, don't you?" He chuckled and said, "I really don't think so!"
*When Emily walked into the room he said, "Hi Emily!" and to the nurse he said, "Did you know that's my sister? Can't she just walk me out of here?"
*To Emily, Nick and I, he said, "We should all go home now."
My Little Man is feeling exactly how I'm feeling....we should all go home now... This has gone on long enough. Unfortunately, it will be awhile before that happens. A friend of mine who also has a son has been here to visit us several times in the past 10 days. After her last visit, she sent me her thoughts in an e-mail. With her permission, I write her words:
After two hours of restlessness and frustration, Christopher finally acquiesced and has given into sleep. I am going to try to catch a little myself. I have high hopes for tomorrow. Although there were ups and downs today, I choose to remain focused on the ups, for the ups are significant! I continue to hear the word"miracle" spoken here in the PICU when referring to my son's progress. I know we still have a long, long road ahead of us, but for the progress he made during the last 24 hours, I am immensely grateful.
With love, Laura
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