Discouraged at the Slow Pace

Toby was off of the oxygen last night for about 6 hours, and did pretty well. They ended up putting him back on the oxygen after a few times where he dropped his oxygen levels. This was during a very deep sleep where he had some periods of pausing in his breathing. He is looking quite swollen in his face today, and has been extremely restless. He's also having a very gassy stomach, which we can't quite figure out the cause of. Please pray that we can figure out the causes of these problems - they're not major, but definitely just one more thing to deal with. I'm certainly feeling discouraged and frustrated with the slow pace of things, and the time it takes to find the right doctor to make any decision about a problem he's having. It's requiring a lot of patience! It looks like they will put his feeding tube into his stomach either Monday or Tuesday, and then next Thursday they will do the sleep study. My parents are taking the boys home with them on Sunday for at least a week, maybe two, as we start to prepare for Toby to come home. I'm overwhelmed at the equipment and room set-up we're going to need to be bring him home. We're praying we can get some type of nursing help to take care of him, so I can at least get out of the house a few hours a week. Lots of things for us to think about. God continues to ask us to trust HIM, sometimes it's even minute by minute. He reminds me that His mercies are new every morning, and His compassions fail not (Lamentations 3). Good night.