Today has been wonderful. Michael had his appointment with his Cardiologist and he was so excited to see us. We haven't seen him since right after Michael got released from Children's. He was so happy to see Michael doing so well.I needed today. To have the Cardiologist see Michael and know that he is going to be ok. It has been so refreshing having Michael home. Don't get me wrong though, it's still tough. His sleep schedule along with feeds and meds have got me doing loops. Well worth it, I'm now seeing the benefits. Michael got his feeding tube out today!!!
Not only did Michael do great this weekend on his feeds but he's taking all of his medications orally. That is a huge win. I'm going to take a second and let you in to his medication schedule. This is what I have on my mind all day long. Making sure I'm not missing or sleeping through my alarms on my phone. Again with the alarms. At Children's and at home.
6am - Propranolol
9am - Amiodarone, Furosemide (lasix), Asprin
2pm - Propranolol
9pm - Amiodarone, Furosemide (lasix)
10pm - Propranolol
Unfortunately not all of these are on his feeding schedule which I have going around the clock as follows;
12am - 3am - 6am - 9am - 12pm - 3pm - 6pm - 9pm
You know when you wake up early every day to your alarm that goes off at the same exact time and for some reason you start waking up just a little bit earlier? Bless our body clocks. My body clock alarms be 15-20 minutes before my alarms go off. Every time. Even now it's 9:38 and I'm thinking "Only 20 more minutes before bed again. 20 minutes".