"They" say that one part of grief is anger. I'm not a real angry person. It's not like me to be angry, so as much as I may feel anger these reminders from Google calendar make me angry (but I won't erase them). They make me angry because it reminds me that we were good at this. We were good at taking care of Josiah. For crying out loud we experienced the ultimate test less than 12 hours after we brought him home for the first time when we had to preform CPR and actually save his life. We did it. We knew what to do and we responded like seasoned PCICU staff! Some people have said to us, "God gave you Josiah because he knew you could handle it." I wanted to handle a whole lot more than we were given. We had Josiah home for 3 days and it was crazy and scary and overwhelming. At times I wondered how we would ever keep this pace up. But in just 3 short days we were beginning to settle in. I even had 3 children all napping under one roof at one time and Milo was at work ( I did have a nurse and Milo's parents there to help, but still we were making it work). The first night we were home and we had to do CPR on Josiah, call 911 and be rushed to the ER, the attending doctor that day told us that we didn't have to go home if we didn't want to. He said, "if your not comfortable having him at home, Josiah has many reason to grant him an extended stay in the ICU in Greenville." We left the hospital an hour and a half after that conversation. We wanted Josiah home with us and we were confident we could do it. Bringing Josiah home from Greenville memorial that day we were asked if we wanted an ambulance to take us and we declined. We couldn't take an ambulance everywhere we would need to go with Josiah so we thought we better figure out how we were going to do it ourselves. Milo went home rearranged things in our minivan and developed a plan for how we would transport Josiah in our van. He came back to the hospital to pick us up and we never had to unhook Josiah from the ventilator or any of his monitors. Milo had come up with a way for us to be able to lift the entire stroller right into the minivan, lock it into place, and only move Josiah in his car seat from the stroller to the base. Milo figured out where I was going to be able to sit to see Josiah and watch his monitors as we drove. This probably doesn't make any sense unless you had seen Josiah and all his equipment, but this was a huge feat that I know John our respiratory therapist and many of our nurses in Charleston would have been so proud of. It was such a good feeling to know that we were doing it. We were good, capable, intelligent, organized parents who could handle this. We had an excellent support system of family and friends that could help us. We were parents with the ability and personality it would take to raise Josiah, not all people could do that, but I believe we could have. Talking about how good we were at all this may sound prideful and it probably is but I know that God gave us the personalities, intelligence and support system to be as good at this as we were. All this to make the point that it makes me angry to think about how great we were at taking care of Josiah and we only got to do it for three days. (I seriously just got a pop up reminder that said "Trach collar trials, increasing 5 mins per day, starts in 10 minutes) Of course, I'm grateful for the three days we had at home with Josiah, I will cherish those days forever, it was something I prayed for since before he was born. But as you know with all good things in life, when you get a taste of something good it just makes you want more. I will always be grateful for what we had but I think I would fooling myself if I didn't say I wanted more than I was given. Who wouldn't want more days with their child no matter how difficult (for us) they might be.
Milo got this reminder on Thursday in his inbox from Google Calendar, "Trach Change day." I didn't realize he was getting these weekly reminders still. In December, when we were getting ready to bring Josiah home, we spent 2 nights "rooming in" with him, proving that we were going to be able to keep up with his care. Through this, we realized that we needed a schedule to keep us on track with his many tasks. There were some things we did 4 times a day, some things daily, some things 3 times a week, some things weekly. It was all so much to keep track of, so we set up a Google Calendar, with each of his tasks from Chest Physical Therapy, to medications, to equipment changes and on and on and on. By the time we were finished setting it up it would say, "viewing task 1 of 47" or "viewing task 17 of 43" for the day. There was a lot to do to manage Josiah's care. Thursday's were trach change day where we would take the trach tube out of his neck and put a fresh, clean one in.