Has it REALLY been almost 2 weeks since I've blogged?! Wow, my apologies. What can I say, except that I've been very, very, very, very, very, very busy. And I've been busy getting things caught up around here. Oh yeah, and I've been kind of busy, too. Here's my attempt to catch you up on our crazy lives.
We were home for 3 days, June 18 to 20. Colby went into the hospital June 21 and had his procedures done June 22. Seems like a lifetime ago already. Let me just say how AMAZING my kid is. He handled everything like a stud! We got home the next day, Saturday, June 23, around 7:00 p.m. And that's where we've stayed put ever sense haha. I've left the apartment twice, both times to run down to Kroger. Other than that, Colby and I have just been hangin' around, adjusting to all the new stuff around here. New way of caring for Colby (i.e. trach), using new nursing agency (hence getting new nurses, too), new cough treatment schedule, getting in new supplies, etc. Not to mention getting caught up on mail, getting groceries, enjoying visits with family and friends, laundry, blah blah, etc.
First of all, how's Colby Michael doing, I'm sure you're wondering. Well, he's doing freaking fabulous considering what he's been through the last couple months. I've been extremely careful with his incisions (port in the middle of his chest and cuts on his you-know-whats), so until this past Saturday he sat up very little. When he did sit up, it was not in his power chair. (BTW, tried that Saturday and it ended in disaster.) He's also having a lot of trouble windowing off the vent. I'm not losing my mind about it, it is what it is. Trying to figure out why though. My guess is still recovering from procedures and not having an IPV machine to get secretions out. Gee, if I only had $15,000 lying around, I'd just go buy us one of those fancy-schmancy airway clearance machines.
The only way I can describe how it's been around here is CRAZY. I mean completely Looney Tunes, man. Ordered Colby's feeding supplies. They were delivered promptly the next day, good, but the order included the wrong feeding bags, bad. Had to call and get that fixed. Still waiting on various trach supplies, not sure whose fault it is they haven't been delivered. We did finally get a shipment of catheters for Colby's trach. Good. They don't have markings on them so we have no idea how far to suction Colby's trach and therefore, they are useless, not good. And no, I'm not going to take an old catheter, put it beside a new catheter and measure it. We have 90 catheters and if you think I'm going to do that 90 times, you've lost your mind. Just deliver the correct catheters, please and thank you. Still waiting on an IPV machine. My guess is we'll be waiting for a while. Going to try and do some followup calls with that today. And so it goes, making phone calls, checking on supplies, unpacking supplies. Sat down yesterday and ordered Colby's prescriptions and supplements. Blah blah, etc.
So far I'm very pleased with the new nursing agency. Again, this is all a process, and it's going to take a while to get private duty nursing in place around here. You can't just call and say hey yo, Colby's got a trach now, send us out a nurse 16 hours a day, thanks. Hours must be approved, employees must be found to cover shifts, etc. The nursing agency gave me the schedule for July and there are a lot of shifts for Colby not covered right now, but I do believe they're working on it. At least they're keeping open communication with me. That's an improvement, huh?
Okay, you get the gist of it. Colby is doing well, as well as can be expected I do believe. I've been extremely stressed since we've been home. I knew it would take some work, but damn, I wasn't ready for all this. Seems like it just all hit at once. This needs to be done before that can be done. This person needs to be called. These supplies are correct, these aren't. Blah blah, etc. I'm sticking with it, though, slowly making a dent in the to do list. Thank goodness I have family and friends who have come over to help run errands, clean, organize, etc.
The really stinky part to all of this is we have to go to Cincinnati Children's tomorrow. Lord, I could just crap my britches thinking about it. The absolute last thing I want to do is pack Colby up in the Terdmobile in the flippin 142-degree weather and go back to that place. He has had followup neurology clinic appointments scheduled for months now and I really didn't want the hassle of rescheduling. So, we'll suck it up and just do it! Then after that, no more Cincinnati
Well, this update is getting long so I'll wrap it up for now. I know I haven't been the best at returning texts and phone calls, dear friends, and for that I'm sorry. Just trying to stay sane around here. Promise I'll try to do better! Happy Monday people.
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