WEDNESDAY PART DEUX

That last sentence from my last update should have said thanks for the continued support, although I'm sure you figured that out. I hate when stupid computers try and guess what I'm saying. Crap half the time I don't even know! Colby has had a great day. Cough treatments are going smoothly. My mom went home for a couple of days and my dad is here with us now. And speaking of HOME, we should be back in ours shortly. Can I get a "hells yeah baby!" I'm totally impressed with how well Colby has done off the vent/on bipap. Still need to work on scheduling Colby's upcoming surgeries. Still need to talk to ortho and pulmonary about spine surgery. Still need to get trained on how to access Colby's port. Yep, no one has bothered to teach me that. Think that's something I might need to know?! My hope is they will deaccess the port here as we're walking out the door, then we'll be back up here within 28 days for surgery. That way they can reaccess it here &thats one leas thing to worry about at home? I swear, for something that was supposed to be so simple & was supposed to make life easier for Colby, so far it's just been a giant pain in the you-know-where. Need to make a list of prescriptions, supplies ans equipment Colby may need. Tomorrow we will try some windows off the bipap. Nothing tremendous. I'd be happy if Colby could spend 15 to 20 minutes off his bipap. Guess that's about it. I know nothing else right now except SMA, blood gas results, the suckiness of SMA, bipap settings, trach talk, wrapping my head around Colby needing up to 4 surgeries in the near future all thanks to SMA, looking at X-rays and CT scans, and hating SMA more and more every single day. I didn't think that was possible but yep, it is. Time for Colby's 10:00 cough treatment, then nighty-night time until the next treatment at 2:00. G'nite gang.