Christopher's day started early today, around 4:30 am, when he awoke and found himself very disoriented and confused about his surroundings. He thought he was at home and that there were strangers there. Those strangers were, of course his nurses and he was quite upset with their presence. Because he was calling for me, they came and woke me out of my slumber. When I walked into the room, he said, "Hi...Mom! These people are in my house and I just want them to go away!" This is all part of the withdrawal. The hallucinations must be terrifying.... We spent the next hour talking about where we are, why we are here and why we can't go home. He wanted to know where Paul, Nick and Emily are, said he misses his bathroom and more than anything, he really just wants to go home. He started relaxing and finally began to settle in and fall asleep.
8:30 am
After only about 15 minutes of slumber, there was commotion in the bay next door which woke him up, and it started all over again. It is now close to 8:30 am and he is once again drifting off to sleep, lovingly wrapped in warmed blankets.
This confusion continues to drive him crazy, although I must admit that I am impressed with his patience and kindness. He apologizes for all of his questions and whenever one of his nurses does a procedure on him, he is cooperative and gracious, always saying please and thank you. Yes, as his mother, he is making me proud....if only I could trade places with him...
8:45 am
Just got a call from Sara, Christopher's nurse telling me that she had closed the curtain around his bed once I left so that he could rest with as little distraction as possible He's in bed 1 which is located just as you enter the PICU, and the nurse's station is right across from it so there's a steady flow of traffic, phones ringing and conversation, in addition to the regular noises such as visitors, families, monitor alarms going off, ventilators running, children crying, moaning and fussing and more. All of a sudden they heard a commotion and found that he had woken up and tried to get out of bed to go to the bathroom. He had spent the morning trying to convince me to let him 'just walk down the hall to the Men's room' so I wasn't surprised to hear that this had happened. When he got out of bed, he of course, had stumbled and Sara was feeling awful. I asked the only question I had, "Did he hit his head?" She said that there was no indication that he had, so I told her to just relax, stop beating herself up and understand that this is not the first time that he will do this. She assured me that she would not be able to stop beating herself up (I think it's part of the job) but that she would try to relax about it.
Christopher is the most persistent child I have ever known. All who know him would agree. I do believe that he even outdoes his older brother, Nicholas. He did not give up on his desire to pull out his ng tube yesterday; he did it once, twice, three and even four times before finally succeeding in getting the order to have it removed. He tried to convince me earlier to let him pull out his central line. He thinks that it is unnecessary, no matter how much I tried to convince him that he really does need to leave it in. The doctor ordered it removed today. Now he has moved on to his desire to get out of bed and walk to the bathroom. He will not give up. I know my child. It wouldn't surprise me if by the end of the day, he is walking, with assistance of course, to the bathroom.
I can't stop thinking about a conversation that I had with Dr. Newman only a week ago. I was trying to pin her down about a whole assortment of things regarding Christopher's medical condition and mostly, his recovery. Her calm, confident response to me was, "Christopher will let us know when he is ready..." and that is exactly how it has happened. Each baby step that he has taken has been, for the most part, driven by indications that Christopher has given us that he is indeed ready...ready to have his pressure monitor, drain, arterial line and ventilator removed. Ready to have his feeding tube removed and begin eating solid foods. I love the way this Doctor practices medicine. It is not about a 'God' standing over charts and test results, dictating orders to those who report to her. No, it is a team effort. Everyone is involved from the top down...Dr. Newman, her assistant, the Fellows, Residents, Nurses, Respiratory Therapists, Technicians, Patient, Mom, Dad, siblings and even close friends who have been at his bedside from hour one. Everyone has a voice and the most important voice of all is that of her patient, whom she not only desires to take care of, but really to care for.
I just got a phone call from Christopher, asking me to come back up to be with him. He wants to tell me about what has just happened up in the ICU....he wants me to come as quickly as possible and, most importantly, he wants me to know that he hasn't moved...he is still in bed 1. I'd better get going...
8:00 pm
I am now at home for the night and oh, does it feel good! Christopher made so much progress physically today. He is now going to the bathroom in a commode...I predicted that one! The central line is out so he is taking all of his meds orally. He was also able to convince all of us that he is DONE with his Respiratory treatments. They place a 'vest' around his chest, inflate it and then move pulsating air through it. Some kids like it...Chris has tolerated it up until today. He persistently undid the velcro on the vest, to the point where it was taking three of us to hold his hands down to keep him from taking it off. We tried everything....logic, begging, pleading, threatening, but he would have nothing to do with it. He just kept saying over and over, "You guys are being seriously annoying!" He looked at me and said, "Come on, Mom...you've never done anything like this to me before. You must stop it now!!" I decided that his agitation had grown to a point that was not good for him, nor did I believe in the intrinsic value of the vest any longer. So I turned to the RT (Respiratory Technician) and said, "Look...is this really necessary? I think it's time to weigh the vest's value." Just then the Doctor Matt walked by. The RT stepped over to chat with him and the next thing we knew, his Dr. Matt said, "Hey Chris, this is your last vest treatment!" Chris said, "FINALLY!" Yes, I have taken advocating for my child to a whole new level!
He is drinking out of a straw (something that he was unable to do only yesterday) and does pretty well feeding himself. Sara and I put him in his wheelchair and took him for a walk this afternoon. As we approached some vending machines, he said, "Ooohh...I'd really like a soda!" So we wheeled him over there and let him pick one out. He chose a lemonade, was mesmerized by the way the vending machine dispensed the drink (he said, "COOL!" when it dropped!), and then took it and held it in his lap. About halfway through our walk, I realized that he had opened the bottle and was drinking it....he couldn't do that yesterday!!! His progress is amazing! He was laying in bed on his side and started saying something. I realized that he was reading the notes written by the boys on his soccer team that were on a big card we had hung on his bulletin board. It's amazing to me that he can read because he is still seeing double! He is still very articulate, something that has always been typical of him.
*When his nurse, Sara was standing at the table at the foot of his bed, he said, "Hey, there are two of you...and you are doing the exact same things! Would one of you please come over here?" Sara quickly said, "I'll come!"
*He continues to be very polite and sweet. When Sara found him after falling, he said, "I'm so sorry I fell..."
*Nick: "Your new name is Methadone Chris...." Chris: "Hell ya!"
*He looked at Emily and said, "There are two of you...and you have, like eight-thousand eyes!"
*(This one is from yesterday, but I forgot to write it...) As his OT was feeding him applesauce, his first solid food in 10 days, he kept saying, "This tastes so good!" She said, "Am I your new best friend?" and Chris said, "Yes...I LOVE YOU!" (photo above of Sara, Paul, Christopher and I in the PICU)
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