Doc guest post.
He had two more start and stops with the Golytely (stuff he's getting to flush through his system), but we are now 16 hours and 43 mL in without things coming back up! They went up on the amount he is getting about 5 hours ago and things are looking good. He is still stooling well and his belly is softening up.
He has a lot of fluid coming out of his chest tube and this is not really responding to the medicine. Not really much in the way of answers for this so far. There is some thought that getting his belly working will help this out, but that remains to be seen.
Other numbers are looking good, so we're taking things one problem at a time and moving ahead.
Doc
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
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