When are we getting out of here?

...I wish I knew. I feel like I'm getting lost with the ENT and Pulmonary consults. Pulmonary were not able to round on Gabe till 6:30pm. I was at home b/c I had a massive headache and needed a break. My mom was at the hospital and gave them the questions I had written down. They called me back at 8:30pm. Justin was at the hospital at that time, but I guess they weren't on our floor when they returned the call. I had all sorts of questions and their answers were a little confusing to me. It's hard to differentiate what is Pulm and what is ENT. Basically, Gabe has tracheomalacia (floppy airway). He also has swollen tissue from the reflux. They are waiting to see the swelling go away to see if they need to do anything with the floppy airway. Swelling takes 2-3 weeks to go away and I don't want to be here that long. They will probably do a repeat sleep study with oxygen or CPAP to see what works for him at night. We will go home with continuous feeds that we will eventually be able to window and transition to bolus feeds in 2-3 weeks. They just rounded on him and our goals are to get him off oxygen during the day, oxygen or CPAP at night and tollerate feedings while gaining weight. They are going to present him at the Cardiology conference on Friday and schedule his surgery for 4-8 weeks from now.

Even though we have been in the hospital 38 of the last 75 days, we are doing okay. On Monday, Child Life brought over a family to meet Gabe (with our permission). Their child was born in July with a single chambered heart. He has already had 2 surgeries and will be getting his third in November. They have been here for 90 days and are living at Ronald McDonald House...puts life in perspective.