Yesterday we went for our first walk with the stroller after getting the tray to go underneath. The tray will allow us to carry all of his equipment. I have been so excited to get it and Ben Brown brought it over last week. We were going for a short walk in comparison to someone without SMA but a true journey for us. Everything was perfectly placed and seemed organized without hoses flying everywhere. We didn’t take everything, only the bipap and the pulseox. We were running off of the batteries that were made for the machine. At nearly 400 yards from the house the bipap shut off.
YOU HAVE GOT TO BE KIDDING ME!!!!!!!!!!!!!
We have had to run back to the house before but now we were further out than ever before. I pulled the mask off of Jadon’s face immediately and even though he wasn’t doing too bad he was alarming. The race was on! Granpa Harvey was with us and I am pretty sure he was doing a lot better than me. I was winded and just praying that the hamstrings were going to hold. Poor Jadon was just bouncing around in the stroller. I wanted to stop and take him out of the stroller and run him to the house, but we need the bipap also.
We jumped the newly installed ramps on our sidewalk like the Duke boys and rushed into the house. I made the quick switch from DC power to AC power and got the mask back on him. His oxygen was below 80 but nothing close to the worst that we’ve seen. With his bipap in place he was back to normal in a matter of minutes while I continued to sweat for the next hour. Daddy is out of shape.
Maybe we are just supposed to stay inside. I refuse to accept that for Jadon’s sake. We will try it again tomorrow when I get the inverter all set up.