THE LATEST AND GREATEST FROM PICU LAND

Fridays are the days the attending doctors (head of the team of staff who is on your kid's case) rotate here in the PICU. They rotate on a weekly basis. I liked the attending doc Colby had for the last week, and luckily I like Colby's attending doc for the upcoming week. He saw Colby quite a bit last hospital stay and is very familiar with Colby's diagnosis, issues, complications, love of all things Spongebob, etc. He was on Team Colby last hospital stay when the first extubation lasted only 20 minutes. That was the day we learned Colby is now a fiber optic only intubation, and yeah, we learned the hard way. We agreed we would give Colby another shot at extubation, coming off the vent. We're going to give it a whirl Sunday. Same as before. They'll alert anesthesia so they can be on call, should Colby need to be re-intubated. We'll start the process after the docs round on Sunday morning. Second time is a charm, right?

After MUCH talk, research, prayer, crying, more prayer, more crying and taking a hard, realistic look at the facts, I've decided that it is time for Colby to have a trach. One way or another he'll have this procedure done. In an ideal situation, here's how I would like it to unfold. Colby is successfully extubated on Sunday. We spend a few more days in Cincy, then get the heck out of here and GO HOME. After that, get Colby back to baseline or as close to his old "normal" self we can. Get him rested, maybe tweak his diet, take care of things on the home front. Then bring him back to Cincy for ALL his surgical procedures, being trach, teeth and testicles. At this point, that's what I would like to see happen. Do I really think it's going to fly this way? I'm not incredibly optimistic. But I feel like we owe it to Colby to give him 1 more chance to get off that vent. If it doesn't work, we'll reintubate him and we'll schedule the trach surgery for next week. Either way sucks. SMA sucks. Enough said.

I've talked to Colby about getting a trach. I asked him if he knew what a trach was, he said no. I find that hard to believe. So I showed him pics of kiddos with trachs and told him the purpose of a trach. (Great conversation to have with your 9-year-old, huh?) I told him quite simply that I think it would help him breathe better. I also told him it should help keep him out of the hospital in the future. I also told him that I would NEVER let a doctor or nurse do something to him that I didn't think would help him. I'll continue to talk to him about it right up until it's T time. At this point, I would do about ANYTHING to avoid these long, excruciating hospital stays. They're so hard on everyone, especially Colby of course, but also my parents, my friends and me, too. We've spent too much time worrying about too many things over the last 8 months or so. I'm content with my decision. Like I said, you're never really sure if you're making the absolute right decision on this kind of crap. But in my head and in my heart, this is the best decision for Colby at this time. So that's what we're going to do. Just don't know when yet.

So we're just gonna hang out until Sunday morning I suppose. Mom is here with me now. I'll go sleep at Ronnie Donnie House tonight. Colby's dad is coming up to see him tomorrow morning. Today we gave Colby a bath, got his sheets changed, took a nap. Also had an ENT consult to discuss trach surgery. That's the scoop for now. More later. THANK YOU family and friends for all the continued support. We really do feel the love all the way up here in Cincy.