Nafey magic had a purdy good day. He has eaten a good share of dry cereal through the day and started receiving pedialyte through his tube around lunchtime. They are going pretty slow with the feeds to make sure that he tolerates it well. They started at 5mls per hour (essentially a teaspoon of fluid in an hour) for 4 hours before moving to 10mls per hour and now he is at 15mls per hour. Since he is still going strong without any complaints, they are going to increase it to 30mls during the night. If all goes well, we'll start him on his formula sometime tomorrow. At this rate, we are looking at coming home hopefully on Friday.
The little guy was in some pain last night and didn't sleep all that great, so he was pretty cranky at various times, but he really perked up nicely tonight and was more of his good ole' self again. His IV infiltrated this afternoon, so they had to place a new one. Poor little guy was a hard stick today. He cried and cried but never once fought the nurses placing the IV. When they were finally successful in placing it, he looked through tear-filled eyes at one of the nurses and said "We all done now? I was a good boy". They all showered him with high fives and gifts and said that his highly uncharacteristic attitude and behavior for any kid, much less a 3 year old, amazed them. One of his other nurses from earlier in the week said, "Nathan is why I do pediatrics. For all the hard things we deal with here, every once in a while you get a kid like him and it makes it all worth it."
He's definitely not laid-back and friendly and good all of the time. He can be grumpy and refuse to talk to people at awful times. He can be ornery and hard to convince sometimes. But for the most part, he really does seem to be an extraordinarily special kid growing up in special circumstances. Alas, he's a mito kid...and due to the complexities of issues they all face, they are hands down some of the toughest kids around. Whatever they are lacking in energy production, they are totally making up for in strength of heart and spirit.
And if none of this makes sense, it is because I have had veeeeeery little sleep the past couple of nights. I think I'm going to curl up beside my precious little son and drift off to sleep soon.