Rambo's Rampages...

Planned admissions are fantasies. Fan. Ta. Sies. At least the thought that they are more expedient and organized is a fantasy. A 12 hour wait in the local ER verifies that for me. Ugh. The important news is that Rambo is fine...... basically. You may remember that I said a week or so ago that he was requiring his vent more and more. It finally got to the point where it was almost full time. A few calls to pulmonary, an xray, and a rather frustrating evening waiting on call backs we were told we would most likely need to come to Hopkins immediately but not emergently, and to keep him exclusively on the vent. I have no idea what the xray actually showed because one doctor told me it looked WORSE than the one in July ( you know, when he almost died), one said there was only a tiny bit of collapse, and another said we needed to be in the hospital.  All of that being said, we ended up getting a call the next morning saying we needed to go to our local hospital and ge

Well. We did it. Somehow we managed to survive an entire week with Ben gone.  We all went a little crazy in the process, but there are 5 of us here, alive and..... alive. Ben is gone for another two days but after that thankfully he'll be home to stay. FOREVER. Right, Ben? There have certainly been more frustrations than I can count. But I'm gonna try to name a few.  For starters..... Yes. Him. And it's really not his fault, his left lung is just absolutely useless at times. Which means lots of vent time. Which means lots of trying to entertain and keep busy in a 4 square foot area. Which means lots of headaches. This boy, thankfully, doesn't want to stop but that causes trouble when he has to basically stay in his crib.  Frustration numero dos: his equipment. The company was recently bought out and there are some differences in the tubing. Things that should be flexible are stiff and vice versa. Therefore, his oxygen tubing is constantly getting crimped

Hello, all. It's been a little quiet on the homefront here. And by 'homefront' I mean only this here blog. My actual home front has been quite busy. You see, we started school on Monday. Big mistake! And by that I mean the idea of homeschool altogether. No, not really. :) Despite the constant groanings, attitude adjustments, and schedule (yuck!) it hasn't been too terrible. I've even had to set the kids straight a few times. Get it?... because I was talking about myself..... ....... In all seriousness, I was desperately hoping to avoid attitudes until at least the second week but they showed up in full force on Monday morning. Nothing a daddy talk couldn't resolve though and the rest of the week was much better.  I really believe that deep down I enjoy homeschooling. It's honestly not even that deep down that I have to search. I know why we homeschool. I like that we homeschool. I even really want to homeschool. But in truthfulness, those moments whe

Everyone said it would happen. Everyone warned me. They said it happens to everyone. And I believed them. I really did but I started thinking at this point we had a system that worked and maybe we would skate through unnoticed. And then it happened. His trach fell out. His trach fell out! Of his throat!!! He didn't even pull it out it just fell out! The velcro in the back of his trach ties somehow came unattached and out it came. I have done innumerable trach changes, but those are planned. Those are nothing like looking over because he's coughing and seeing the trach and ties hanging to the side.  *shivers* Thankfully, because people had warned me, I was mentally prepared. I had run through over and over again in my mind what to do in that situation but I'd be lying if I said that I didn't have a serious case of the shivers immediately following. Thankfully it went right back in with no issues. I don't even think he desated. I also don&

Must be a nice way to spend a Saturday. In truth, I'm not too far behind. I did only just get out of the clothes that I've been wearing since yesterday morning. Although that may not have been as much of a choice as it was the fact that time eludes me. Rambo has been feeling better but the past two days we've been keeping him on his vent during the day because he needed the pressure.  Unfortunately this keeps him in a close vicinity to the bed because of the tubes. It also keeps me in the house (more so, if that's possible) since it's all a little more precarious.  The good news is that today he has been off the vent since he woke up and doing well!  The doc put him on an antibiotic the day we took him and I just got a call about the results of the culture. Of course I missed it so we'll just have to wait until Monday. **************************************    Bubbles. That's what's up. Ignore the sheet hanging up in the