Tuesday, September 13, 2011

WE WANT TO GO HOME - 21 DAYS OF THIS B.S. IS QUITE ENOUGH

I'm so tired I can't even hardly think straight. I've been wracking my brains trying to figure out what we can do different the next time we "E." You know I love this hospital and most everyone in the PICU is fabulous. But I've picked up on a couple things that tell me some of them know a lot more about SMA than others. And no, I won't name names lol. I've decided the next time we try this scary "E" stuff, I'll be calling all the shots. It's not going to be any of this well this doc said this so maybe we should try that, and there sure won't be docs trying to talk me out of something that I think would benefit Colby's recovery. So I'm collecting all my info. Talking to the attending docs who have been around a while and to the RT's who have lots of SMA experience. Talking to other SMA fams who have had successful "E's" here at Cincy Children's. Looking at what has worked for Colby in the past. Putting this altogether and revising my "Colby's Extubation List." And this time around it will be done when I say according to the protocol that I line out for Colby. I'll take 100% of the responsibility for the outcome. Hell, like I don't do that now with the decisions I make for Colby. So, that's the new plan, Mama's Plan. I'm just sick of hearing well maybe he just needs more time. Bullshit. He needs changes. You do the same damn thing all the time, you get the same damn results. I won't be asking for anything major like hold Colby up by his ankles and let the secretions drain out that way. I think some subtle changes will make a world of difference. Gonna get interesting around here in the very near future. As you can tell by my tone, I think we're all just about done with this hospital crap.

Colby has had a good day. Very stable on the vent. We have his oxygen weaned down to room air. His pressures are weaned as far as they're going to be weaned for a couple days. I'm tempted to put a sign on his vent that says, "you toucha da vent, I breaka you fingers." Colby is exhausted. I usually get really ticked when people say they feel sorry for Colby, but this time around I think it's totally deserving. You know he has to be scared, tired, bored and sick and tired of people messing with him all the time. His RT tonight is Maria and if I didn't know any better, I'd say Colby has his first crush. She's so sweet and always talks to him during his cough treatments. He never takes his eyes off her. I think it's about the sweetest thing I've ever seen. For entertainment we're coming up with goofy names. Today Colby had nurse Super Steve, RT Jazzy Jen and CCA Narly Nikki. Yeah, how pitiful are we? So tonight we have nurse Katy and RT Maria. I'm thinking Kickin' Katy and Marvelous Maria, what do you think? Great googley-moogley, I need out of this place.

The good news is Colby's pulmonologist stopped by. Actually Colby sees 2 pulm. here. This doc has been with Colby since he was first diagnosed. He has never steered us wrong. Even Chris likes him. And guess what, I'm not totally crazy! He agreed with leaving Colby's settings alone and had some other suggestions. So glad to hear his take on all this. I felt much better after he left. Third time for "E" will be a charm. Don't really know when that's going to be, not for a few days though. Hurry up and wait, hurry up and wait, the story of our lives.

My sister-in-law came over and spent the day so Dad could go home and Mom could stay at home longer. She brought Eat, Pray, Love and we watched that. It was a nice change. Not that I don't love my parents being here with us, but some change is always good.

We got a sleep room tonight so I'll be able to get some uninterrupted, glorious sleep. Talk to you crazy kids later.

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