Forgive me for being such a bad blogger! Life has had its ups and downs and I never seem to have a quiet second to post my thoughts anymore. Lots of news right now. We have full time nursing now! Hooray! Tommy's nurse, Kari, comes in 4 days a week from about 3-9pm. I'm so thankful to have her. It's been such a relief not to have to worry about changing him when I am in the middle of cleaning or trying to cook dinner. Plus I'm getting to spend a little bit more time with Matthew and Brandon. We're just now getting into the swing of things, and I'm hoping next week to be able to get more done around the house and to start having a little quiet time too.
Tommy had his follow up bronchoscopy after his tracheal reconstructive surgery. It is officially a success! He still needs his tonsils out, but other than that, he has the perfect airway. Of course, this is Tommy and nothing is easy. He's on 80% oxygen to maintain his sats. He's normally only on 35%. We feel the time has come to intervene with heart surgery in the near future. I think in the morning, we are going to start weaning him back down if he can tolerate it. I really hope we can go home tomorrow night and make plans for all of this instead of being thrown into chaos.
Today is going to be a fun day. In a couple of hours, Rob is bringing Matthew and Brandon to the hospital to stay the day with us. I plan to take them to the Children's Atrim so they can play and I can relax. The volunteers are holding a breakfast for the families as well, so this is going to feel like a party to them! I'm actually very excited about all of it. Just wish Tommy were stable and could come with us to the Atrium. Maybe next time...because knowing Tommy, there will always be a next time.