ARE WE READY? SO HARD TO TELL

Basically I see improvement in Colby overall. His secretions are much thinner and there are less of them. That's a good thing. We're continuing cough treatments every 3 hours around the clock and have done so for the last 4 days I think. Colby still has not had any fever. That's a good thing. His x-rays are looking clear with no signs of collapse or pneumonia. That's a good thing. Since no cultures have grown in any of the samples they've taken, we're discontinuing the antibiotics. That's a good thing. Docs have finally decided to take Colby off Lasix since he wasn't responding that well to it. That's a good thing.

So why am I freaking out and am hesitant to extubate (take Colby off vent?) Well, because last time when we were what we thought was overcautious, the extubation didn't work and it was a huge setback for Colby. I've been talking to other SMA families, asking them what checklist they follow before they agree to having their kiddos extubated. This time around I just want to make sure I have more info. so I can make a better decision. I'm a complete nervous wreck. I really am. I know it's hard to ever know if you're making the right decisions for your kids, but in this instance it can literally be a life or death decision and of course I don't take that lightly.

Colby did have a little bump in the road last night. His blood pressure was elevated for a while. They gave him a dose of Lasix because he is holding so much extra fluid, which can contribute to high blood pressure, but that really didn't work as well as they had wished. Colby didn't pee out as much fluid as they were hoping (that's why they agreed to discontinue it). Then they decided to put him on hydralizine but by then Colby's blood pressure was getting back to baseline, so they didn't give that to him. I'm not too stressed over it. I think it was an isolated incident. He also didn't sleep any last night. I mean none! He took a big nap yesterday. I just assumed he was catching up on sleep. But maybe he's already caught up on sleep because last night those big brown eyes were wide awake pretty much all through the night.

Colby's right foot looks awful, very puffy and swollen. This is the foot where the IV blew out and the medicine leaked out into his foot. Also the foot where they gave 5 antidote shots to absorb the medicine. So I'm hoping it just needs more time. I've had every doc and nurse look at it and they seem to think it'll heal on its own. Sure hope so.

So, I need to do a little more reading, talk to Colby's neurologist, and there is 1 other SMA family I would like to talk to before deciding about Colby's extubation. At this point I'm thinking Wednesday, if Colby continues to do well with no oxygen drops, drastic changes in labs, etc. Okay everybody, start praying for a smooth sailing, successful extubation. Don't know if there's a patron saint of ventilators. If not, there should be!