I got to the hospital about 4:30 yesterday afternoon and found our little guy sleeping soundly. He looked so beautiful and peaceful. Well, that lasted until about 7:00 pm and then he awoke and was not a very happy little boy. At 8:00 his meds were given including his melatonin and out he went with a few wakes by the nurse for checks, feeding and braces being adjusted. It seemed like I was in for a good night but once again Charlie let us know that he was in charge. About 12:30am (you could have called, Jill) he woke up and decided to be fussy. You see, Charlie did not receive his scheduled Clonadine at 12:00 (that is his favorite) due to a slightly low blood pressure. Charlie continued on for fussing and agitated (possibly storming) until 3:30. The nurse suctioned the mucus and then readjusted him, diapered and for the second time in the night changed his bedding as he had sweat it through - just to add to the stench. At 4:15 he finally went to sleep and at this time his is still asleep. Dr. Such-Nieber came this morning and said hat they maybe were too aggressive in giving his food too fast. They are now going to give him his five feedings a day with each taking 2 hours instead of 1 1/2 as it is now. The goal is to get them less then 1 hour or some even go to 15 minutes. Also, they will work to get his meds grouped so that they will not give any during a 6 hour period during the night. But that is the goal.
TODAY: They will try to do the swallow test on Charlie at noon today but have scheduled some PT first to see if they can keep him awake. Hoping for the luck of the Irish on that. Grandma Kathi