Wednesday, April 29, 2009

Daily Dose: Wednesday, April 29

Hope is looking at something interesting

"Did you just say I have more new clothes?"

"This is what I think about CPAP"

Hope had a quiet day today, which we are all thankful for. She had no episodes, gained 20 grams (putting her up to 3070 grams), went up slightly on her feeds and nutritional supplements, and got some great snuggle time with Grandpa R, Mommy & Daddy.

While Hope was chilling today, Mommy & Daddy had a very big day. They had a discussion with the doctors to discuss what happens between now and Hope's discharge, aka "care conference." The doctors are firmly recommending a tracheotomy and Mommy & Daddy have consented to that. It will take Hope a couple of weeks to recover from the surgery. After that the focus will be on weaning her back off the ventilator as she will be on it for surgery, and then determining whether or not she will be able to feed orally. If she isn't able to get most of her nutrition orally, Hope will have to have another surgery to have a G tube put in. That will provide semi-permanent access to her stomach.

Breaking it down.... Hope is going to have a tracheotomy. If she does well with the tracheotomy and feeding, the anticipated arrival home is 5-7 weeks. This is a little bit longer than we had anticipated, but it is not devastating because there is finally a light at the end of the tunnel, a ribbon at the end of the marathon, an exit off the highway, a... (ok, I think you get the point) Please pray for ALL of us that we can find patience with this new knowledge and our extended stay in Indianapolis. A special prayer request straight from Hope: please pray that Daddy can keep his mouth shut and not make a scene for a few more weeks. Apparently Hope knows her Daddy just as well as the rest of us and she's only 5 months old!!!

1 comment:

  1. Tell Hope's daddy that if he doesn't behave in a respectable manner, I will confiscate all of his flutes for an undetermined amount of time.