4/30 - Amazing Day

Yesterday was just such a good day I kept waiting for someone to pinch me and have it all fall apart. It started off around 10:00 am when our trach trainer stopped by and said our Pulm Doc decided Leo was ready for an HME and ready to wean off his oxygen. Terry and I have been saying this for a month, but no one wanted to "rock the boat" and wean oxygen. An HME is a little valve that is placed at the end of the trach to filter and warm air before it is inhaled. It essentially functions as a nose. The best part is that it does not have any tubing or machines attached to it! It is just Leo breathing room air. Leo successfully went oxygen free for 8 hours yesterday and 12 hours today. This is such a huge win for our family. We can enjoy life so much more without machines and wires attached to our little guy :). His new goal is 16 hours per day on HME and then 8 hours per night on the vent. They worry about trach kids burning too many calories just breathing and then they fail to grow. They say the vent at night gives them a nice break to recharge.

Moving on to the next piece of great news.....they hired a night nurse for us! We now have a full time day and a full time night. It is only 80 of the approved 120 but they said it is enough for us to go home on 5/13. Yeah!! They are still working on getting us some more nursing to fill the gaps.

Hey look at me! Wire free is the way to be!!