Let me tell you how awesomely awesome Colby is doing! Yesterday he took 3 breaks off his bipap - 15, 20 and 25 minutes. That's plenty for his first time off since all this crap-ola started. Today he has had 2 bipap breaks, 1 for 30 minute and 1 for 35. Oh yeah, major, major progress!! As of right now we're scheduled to get the hell out of Dodge this Sunday! If I'm not mistaken, that's less than 48 hours from now. Can't be soon enough. If I thought he was ready, I'd tell Dad to fire up that Terdmobile and let's get this kid home. Sunday we'll go home via ambulance. Think they'll run through a drive-thru, like Panera, and a drive-thru, like Bob's Liquor World, once we get out of city limits? A girl can dream, can't she?
I'm at the computers over at Ronnie Donnie House right now. Getting ready to go get the rest of my stuff out of the room. When Mom comes up tomorrow she'll pack up the rest of her stuff. And she's chomping at the bit to get that room cleaned up. Ronnie Donnie asks that you clean your room before you check-out. I'd say that's the least we can do. What a blessing to have this place. It made this stinking hospital stay bearable. There for a while I was wondering if I wasn't losing what shred of sanity I've managed to keep over the years. But then again, maybe I have.
Been reading the Hunger Games. If you've read it, did you just love it? My BFF let me borrow her Kindle and I'm almost done with the first book. Should be able to get through it tonight.
As of right now, here are our future plans. #1 - GO HOME, first and foremost. Nothing short of Colby doing a complete 180 and ending up back on the vent is going to stop me from getting this kid HOME, out of that damn hospital bed, near our family and friends. #2 - Rest, relax, enjoy time with loved ones. Colby and I will be MIA the first couple of days after getting home. Then hopefully I'll be able to have dinner or lunch with some friends here and there. Maybe do a couple little things with Colby, the zoo maybe? Have dinner at the Moose one Friday night? IDK about all that yet. #3 - Get back up here the 3rd or 4th week of May for Triple T surgeries - trach, teeth and testicles. We'll be here 4 weeks or so for all that faldy-raldy. Oh joy. Everything you ever wanted to know about trachs and trach care, but really just didn't want to have to ask. #4 - Go home, recover from Triple T surgery. Have the biggest, bestest, blowout birthday party a 10-year-old sweet boy could ever ask for. #5 - Come back the first part of August (probably?) for spinal fusion surgery. My mind can't even go there right now. Spine surgery, holy freakin' crap.
But for now, take one thing, one day at a time. And now is the time to pack and get this kid home. Dad is leaving tomorrow afternoon after Mom gets here and will stay home, so I'm going to send some stuff with him. Also sent some stuff home with Mom when she went home a couple days ago. How do you manage to accumulate so much crap during a hospital stay?!
THANK YOU, everyone, for staying in touch, praying for us, giving words of encouragement. This SMA journey sure has some slippery slopes and turns, doesn't it? That's nice talk for saying SMA sucks so bad you can't find words to describe it. We'll continue the fight as long as Colby wants to continue it. He has given me no indication he's ready to give up, so by golly we can't either. What a brave kid he is. So very proud to be his mama!
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