Thursday, April 8, 2010
Isaac is home! It was probably one of most heartwarming exits from the hospital because so many people saw the night and day difference in Isaac. It was really difficult for hospital staff as well as us to watch Isaac in pain. To see really busy Doctors leave the room in search of CD players and pillows to try anything to comfort him was affirming to me....to see the compassion they had helped to confirm we had the right team of doctors for him.
We were so excited to see Isaac become a happy and interactive little boy again. The staff--from the CSA's to the respiratory therapists to the doctors, were genuinely rejoicing with us! They were really amazed at the difference...and I don't think they thought we would get back to this point. It was so nice to have others who were there through the last weeks be able to see things change in a miraculous way.
Isaac will always require medications to help him manage his world and his own body. Right now, his med schedule is around the clock every few hours. In time, we will be able to adjust that and lessen the frequency of the meds. He came home with some supplemental oxygen (and an oximeter to read his oxygen levels and heart rate)when he needs it.
The doctors expect that when ever a virus or a cold comes around, Isaac's brain my over react again. But now, we have a home plan and medications that will help him to get through another neurological event like this. Lord willing, we may be able to keep him out of the hospital and pain controlled from home.
The next weeks hold lots of follow up appointments and tweaking of feeding schedules. Good thing Isaac came to us with lots of meat on his bones (after being previously diagnosed with failure to thrive!) He is actually on much less volume of feedings but is maintaining his weight because he is not vomiting it back up.
He is sitting with me smiling as a type..having a great morning. When he does cry, I find it hard not to feel physical anxiety...a feeling of "is it starting again?" I
am praying that these reactions will subside and we will get back to "normal." Our normal that is...
at 10:00 AM