The past four days have been considerably less than exciting.
Our Occupational Therapist Christine left us for the weekend with a plan to get Ginny eating. As usual, Ginny had plans of her own that didn't exactly match up with ours. The goal was to get her eating 65 mL through the bottle by Monday. We would do that beginning with 3 oral feeds on Saturday, then 4 on Sunday, working our way up to all 8 feeds through the bottle. Saturday started off great with Ginny taking 20 mL in the morning, but decreasing with every feed after that. Same on Sunday. She just didn't seem interested.
When Christine returned on Monday, we tried with a different type of nipple to see how Ginny would respond. She did well in the morning, but then continued to lose interest as the day went on. We removed the feeding tube for a few hours yesterday morning to see if that was interfering with her swallow, and to get her into a hunger-satiation cycle. That wasn't working either. Rachel stayed at the hospital last night with Ginny to try to get her in the habit of eating by mouth at every feeding. Nothing seems to be working. It really is quite discouraging.
This morning during rounds, Dr. Saidi (cardiology) suggested to Dr. Malhotra that perhaps since we live in Gainesville, and we are pretty smart and responsible parents (sadly, a lot of their patients are not) that we could take Ginny home with her nasal-gastric tube and continue to teach her to feed at home. "Would you be comfortable with that," Dr. Malhotra asked. "Can I bring the car around now," I replied. Things don't quite move that quickly around here.
This afternoon we have been going through the discharge plan - learning how and when to administer her various medications, how to work the take-home feeding pump we were given, and how to make sure her nasal-gastric (NG) tube is in her stomach correctly. Shortly she will get her car-seat test. We have to strap her in her car seat to make sure she doesn't have a freak-out that will require medical attention.
Tomorrow morning Ginny will head down to radiology for another swallow study. Hopefully she will be able to graduate to the standard-flow nipple. If she passes, we'll switch nipples. Either way, we're switching cribs. In the afternoon, we're strapping her in the car seat and heading to the house. Tomorrow will be a very good day.