Friday, July 13, 2007


For the past 24 hours since having his mic-key changed he has been on continuous feeds, meaning instead of him getting the 80mLs of fortified breast milk in about 20 minutes every three hours he gets the 80mLs over the three hour period equaling out to about 27mLs every hour. This change has come about because of his g-tube constantly leaking. Mike and I both think that the reason he is all of a sudden leaking is because when the doctor changed his mic-key to a bigger size french he also has one that has a bigger stoma length. We brought this to the attention of the doctors at rounds and they said that we need to give him atleast another 24 hours to heal and adjust.
We also got some disappointing news, the docs talked to Kirstie, Dr. Foker's CRNP and she said that they don't really send kids home usually with EA because of the replogle and need for constant suction but she will keep it in the back of her mind and maybe in a week or so we can discuss it further. We said that we understand and we wouldn't want to bring him home until his feeds and g-tube straighten out. I'm particularly upset just because we are so active in his care, we feed him, know how to clean and maintain his g-tube site, we would even be willing to learn how to put the replogle in(mike knows how to tape up the replogle and keep it in place.)
Mike went to Parents Lunch Out(I was too upset) and met another family whose daughter has one of the longest gaps known (8cm gap at birth). she is now 4 years old and doing good.