Ben is still in PICU but getting better each day. He is in a lot of pain, and can't move to much, but he is getting there. So far all his cultures have back negative so he is off the round the clock anitibiotics. He took the NG tube out himself, and the surgeon said it was ok to leave it out, as it was doing almost nothing as far as draining. The gtube drained about 1600 cc a day out of his belly, but that is down to about 300 and today he is on a 4 hour trial of being clamped to see how his belly/ intestines do.
If that goes well, he may be able to have some pedialite later tonight. One small step at a time, right?
The request is for Wednesday. March 31 is Congenital Diaphragmatic Hernia awareness day. Could you please wear turqoise and tell someone about CDH? This bowel obstruction is a direct result of Ben's CDH and will likely not be the last complication he has from it.
CDH is when the diaphragm does not form correctly in utero and allows the organs to float up into the chest, therefore restricting lung develpment. This always requires surgeries, and less then 50% of babies born with CDH survive. (our surgeon said the # is more like 25-30%, but most things I find say closer to to). Either way it is NOT ENOUGH. Our family is trying to spread awareness, and if you would you can help simply by wearing turqoise on wednesday and telling someone else about Ben, about CDH.
Thank you so much for helping, and for the thoughts and prayers. Hopefully soon he will be coming home.