So the pulmonology team decided to start sprinting me to see whether I have truly improved in my breathing or not. To do this, I had to go to the miserable hospital where the medical team connected me to the monitors to make sure my oxygen, heart rate, CO2, and respiratory rates were within a comfortable range. Then they disconnected my ventilator completely! My life line 😱 I was able to stay off the vent for 15 mins while maintaining my oxygen levels and other stats. They didn’t want to push me too much for the first time so they shared with us a phased schedule to continue sprinting me at home. Starting at 15 minutes twice a day and then increasing to 30 mins after 2 weeks, and then to 45 mins, 2x a day in May until the next pulmonology appointment in June, as long as I can tolerate it.
This is me with full energy in the morning 🔋Connecting me to the monitorsPlaying with a paper towel while my vent circuit was disconnected
The nurse care manager was very excited for me 😅 I’m not sure why everyone was staring at me 😳 After the sprint, the medical team abadoned us and made us wait for a long time. That’s when daddy kicked it up a notch on the entertainment 🤣🤡There’s a rooster 🐔 in the room
Ok so not sure if that was amusing or straight terrifying 😨Super pooped after the sprint… I’ll just rest my leg however I want toAlrite guys let’s move onto cooler stuff like the beach 😎Redondo Beach along the EsplanadeSand everywhere!Huge tree at the park near the beach More beaching at ManhattanThere’s the nurse pushing me on the bike path while Mommy runs 5.5 miles the other way towards El SegundoPeople watching while waiting for mommy Shopping in the toy aisle Easter accessories anyone?Or maybe this one is better … A naughty looking bunny … This is my innocent “I didn’t do anything sneaky” lookThis is the seat I prefer in the van – right in between the seats outside of my car seat with a great view of the front ☺️Applying for Access (provides accessible van transportation for persons with disabilities).Guess how much that entire set up of stroller plus equipment plus go bag plus cool fan plus me weigh!!! 120 pounds!Now you’ll have more empathy when you see mommy struggling pushing all of this up the hill 💦This is where I would be sitting. Major upgrade in view compared to where I sit in the van now!Getting to meet mommy’s roommate from University!This is me, really pissed, with the medical personnel that replaced my GJ feeding tube. It feels uncomfortable! I was sweating big time and crying for the whole thing. This is me, holding on for dear life when I’m scared of something. The noise from the toy was alarming me 🙉 but I still wanted to look at it!
