Second day being sick

'Don't know exactly what he has, but Jojo is definitely sick. Last night, Brady got up multiple times every hour to suction him or turn him on the other side or give him a breathing treatment or do the cough assist. I finally got up at 3:30 to help him. We did the vest and Jojo slept solid for almost two hours until Brady had to turn him again after 6. I called in at work at 7:30. There was no way I could leave those two at home with Brady just having a couple of hours of sleep.

Jojo never got off the bipap except during cough assist sessions. I stayed with him the whole day while Brady ran to the store, connected a new inverter to our van, did stuff in the house and finally took a nap. As of this time, Jojo is still on bipap, and finally, playing his computer. His heart rate and respiratory rate are still higher than normal. He requires 1liO2 in-line to keep his O2 sats at mid to upper 90's. He continues to require oral suctioning every 2 to 3 minutes. We are betting on being up a lot tonight.

I hate to put my co-workers in a bind, but I really can't tell if I can go to work tomorrow . I've worked for my current company for close to five years. Those that I've worked with since Jojo was diagnosed seem to have some understanding of the demands of having a child with SMA especially when he is sick. They knew how often we ended up in the hospital the second year that Jojo was diagnosed. But the new ones, I don't think they understand how big a deal it is if Jojo has a fever, or a simple cold, or sinusitis, etc. Oh well, I don't really have the time and the patience to paint a picture for everybody.

Logistics-wise, I started with 11 PTO days this year. So far I have used 2 days, including today. The question is, how are we going to devy up my remaining PTO so that we can go to the Courageous Kids Camp next month, go to Sea World in Texas, take Jojo to the dentist, the ophthalmologist, cardiologist and 2 or more other medical appointments, throw in some future sick days for him or me.......One day at a time. That's how I should take it. One day at a time.