YOU GOTTA KNOW THE BAD TO RECOGNIZE THE GOOD I SUPPOSE

Talk about learning the hard way! Looked at the backup battery and figured out that the "battery connector" in the back had come out. I guess it's like a ground wire thingy? As soon as I plugged that thing back into the back of the battery, I heard it click on. It about made me sick. That's all that was wrong with it!? We've been using this kind of backup battery for years, and not once has that thing ever come disconnected. It wasn't even on my mental radar of things to check. I'm disgusted that Colby had to go through all that, that we all had to go through it. The whole thing may have been prevented if I had known to check the connector in the back. Seriously makes me sick to think about it. And to add insult to injury, my Hoosiers lost last night, to freakin' Minnesota! It was awful to watch, just awful. It was a stinky end to a stinky day.  

But it's over and done, lesson learned, let's move on. Today was better in every way imaginable. #1 - We weren't in Cincinnati, #2 - Colby didn't choke and turn blue. Colby had a great day. I decided after the infusions and the "incident" in the van, I'd just let him rest today. I had to work and actually I was glad to be there. Helped me get my mind off the "incident" and it was nice to concentrate on something besides SMA, even if only for a few hours. His night nurse and I gave him a bath. It's like a dad-gone revolving door around here. Day nurse was here. Then Hosparus nurse stops by to do a quick visit. Day nurse leaves at the same time night nurse got here. Walgreen's Infusion delivered supplies. It's like this around here all the time anymore.

I want to thank everyone who left comments, or called or texted to check on me last night and today. I can always depend on my friends to get us through the rocky times. Things are already looking up. Tomorrow, God willing and the creek don't rise, Colby gets his new power chair. Oh my, how very exciting! It'll be another crazy day. Day nurse. Walgreen's Infusion nurse will come to draw post-infusion labs. National Seating dude will deliver wheelchair. Colby's PT will be here to assist. Permobil dude will also be here to make sure the new chair is just right. Welcome to our crazy world.  

Okay, must run. The new season of Duck Dynasty is starting in 3 minutes! Good night all. 

HOW SHOULD I DESCRIBE TODAY: "SUCKY" KEEPS COMING TO MIND

Took Colby to Cincinnati Children's yesterday for his 2nd round of palmidronate infusions. These are to help with his low bone density. Normal range is +2 to -2, Colby's is usually around -4.1. Left home around 10:00, and by the time we drove up there, went through Admitting, and got to our room in the TCC it was about 1:00. They didn't start Colby's infusions until 9:30. It was just a bunch of blah blah it seemed. Had to access Colby's port. Had to take labs. Had to wait for lab results. Had to wait on endocrinology consult. Had to wait for shift change. Had to wait on only who know what else. The infusion runs over 4 hours. I guarantee we won't be getting up there that early next time we do these infusions. Lucked out and got a room at the Ronnie Donnie House, so I sent Dad over there and I stayed in the hospital room with Colby. We were discharged shortly after rounds this morning and were glad to be heading home.

Here's where it gets nasty. First of all the weather was for shit. Cold, windy, dark and dreary, raining cats and dogs. Just totally yucky. So Dad was driving. Colby was in the middle in his wheelchair. I'm in the back seat keeping an eye on Colby. We were a few miles from home and I noticed Colby's oxygen was slowly starting to tick down a little. No big deal. It had been 97-98 the whole ride home, and now it was hanging out at 94-95. But still, this ain't my first rodeo, so I perked up a little. Colby was due for his 3:00 IPV and CoughAssist treatments and I knew the sooner we got him home, the better off we were going to be. Then his oxygen slips to 93. No problem, I thought, I'll just give him a round of coughs and we'll be fine until we get home. So I go to turn on the backup battery, because Colby's CoughAssist machine is a huge honkin' piece of equipment and requires its own power source, and it is completely dead. Dead. Dead. Dead. Won't even click on, deader than dead. Colby's oxygen is starting to drop steadily. He's in the 80's and looking very uncomfortable and in distress. I can hear the gunk rattling around. I suction his mouth and his trach, but he's getting worse and worse. I got out the oxygen tank and hooked it up to Colby, then very calmly tell Dad he needs to get on it and get us home ASAP. Well, I thought I sounded calm, probably in reality there was terror in my voice. Looked at the pulse/ox and Colby's oxygen was reading in the 30's. That's right, the 30's. And I had no way to clear his secretions except for oral and trach suctioning because I have no way to power the fucking CoughAssist machine. God bless my dad, he gets a little panicky during these situations. He kept saying, what can we do, what should I do? Pull over? I was like no, we're so close to home, just GET US HOME. By then Colby's oxygen was back up in the 70's and rising. Slow and steady, it went back up into the 90's and the color was back in my sweet boy's cheeks. I kept telling dad, he's fine, he's okay, telling him Colby's oxygen numbers. If putting oxygen through his vent hadn't worked, my next step would have been to use the ambu bag on him. Long story short, we got home, gave him his cough treatments, and Colby is fine now. He's back there just jabbering away, oxygen and heart rate perfectly normal.

  

I, however, am not fine. All of this happened after a trip up to and overnight stay at Cincy, which is stressful enough. I'm exhausted. Completely physically, mentally and emotionally SPENT. I usually don't panic when Colby chokes like that, but when we were in that van, and I had no way to clear his secretions, and we were travelling down the road in the pouring down rain, I started to trip out. I kept saying, "It's ok Colby, it's ok, we'll get you cleared out." I kept telling my dad, "He's ok, he's ok, his oxygen is in the 90's, he's ok." But inside my guts were churning, my heart and brain were racing, and I was praying like I've never prayed before. God, get us home safely in time to help Colby, please. So if you've called or texted tonight, sorry I haven't answered, not much in the mood to chit chat. Please understand. I need some quiet down time to recover from today's events. I wouldn't wish SMA on my worst enemy. It's mean. It's evil. It can show its ugliness at any given moment. I can't begin to explain how helpless it makes you feel. The end.

THIS CHILD WEARS ME OUT, BUT IT'S SO WORTH IT!

Aaaaaah, Sunday morning quiet time. I've got about an hour before I need to start Colby's cough treatment. Dishwasher is running. SportsCenter is on in the background. I'm chugging a delicious cup of hazelnut coffee. The perfect ambiance to do a blog update.

Our visit to the firehouse on Friday afternoon was so super fun! To review, there is a firefighter who also happens to be an RN. He was shadowing Colby's nurse for a few days at school. Of course he realized Colby's awesomeness early on, and had invited us to take Colby down to his firehouse to get the grand tour. So, this firefighter, Mark, and the chief took us around and showed us the in's and out's. Colby even got an official LFD toboggan. He's going to wear it like every day forever! They showed us the trucks, the jaws of life, how they slide down the pole when an alarm is called. We took Colby outside and they let him turn on the water hose. They put up the ladder, and Mark climbed all the way to the top. I never realized how far up those suckers go! Yeah, and Colby's nurse (who is also single) and I didn't have any problem hanging out with firefighters for the day, just sayin'. It was a great experience. Believe it or not, it was also only the 2nd time we've had Colby out in the new van. The only other time was the day we picked it up. See, told you he doesn't get out much in the winter.  

So apparently it's perfectly acceptable for an adult to go to bed before 11:00? Or in some cases before 10:00 and even 9:00?! Who knew? Certainly not me. I always try to stay up after getting Colby in bed to get some stuff done around here, whether it be housework, checking the calendar for appointments and when bills are due, etc. But lately I just haven't been able to do it. I've been one tired mama! The other night I had put a comment on Facebook that it was 9:54, I was going to bed, and I'm lame. I was surprised at how many posts followed about people going to bed early. Shocking! People were saying look, if you're tired you're tired, go to bed. Thanks fellow sleepy Facebook friends.   

Having some major Hoosier-watching withdrawals this weekend. They don't play again until Tuesday. And no, I won't be watching the Daytona 500 instead, I don’t care how many wrecks occur. Not exactly a fan of watching cars drive in a counterclockwise circle. I know I'm ticking off a lot of friends when I say that, I'm sorry, but it just bores me to tears. Don't unfriend me!

Yesterday I worked, then when I got home the nurse and I got Colby in his chair. He did eye gaze for a while. His nurse was in the living room with him, I was in the kitchen. There were 2 different times when I walked in the living room to check on him and he said "goodbye" on eye gaze. Okay Colby, I get the hint, you little crap head. His night nurse and I gave him a bath, then I went Krogering. What a way to spend a Saturday night, huh? The guy in line in front of me at Kroger had frozen pizza and beer in his cart, AND he was using coupons. Now come on, that's hot. If I hadn't looked like death warmed over, I may have struck up a conversation with him. But I just wasn't feeling it.

There were a couple of things I wanted to do Friday night. Luke Bryan was in concert here in town. I love his music and yes, he is yummy good looking. Why didn't I get tickets to see him? Oh yeah, I'm broke. The Velcro Pygmies were also in town, love them. Didn't go see them either. Plus I had to work the next day and didn't want to be more tired than I already have been, or maybe slightly hungover (who, me?). This apartment was disgustingly cluttered and I had 4 loads of laundry that needed to be folded and put away. Plus I chose to use our nursing hours during the day to take Colby to the firehouse. So I stayed home Friday night for various reasons, and yep, I'm pretty sure that qualifies me as a total lame-o these days. But I know I made the right choices, and I guess that's what matters.

You're caught up now. Coffee cup is empty. Dishwasher is done, time to put in a load of laundry. Have a super Sunday everyone.

RANDOM THOUGHTS, BY AMY

I have cabbage and smoked sausage cooking on the stove, with plenty of season salt and dripping with bacon grease, of course. I am my mother's daughter after all! Doctored up some Jiffy Mix with sour cream, corn and shredded cheese, it's in the oven. Colby is on the couch watching guess what, yep you know it, Spongebob. It's the one with the magic conch shell. We've seen it 1000 times I'm sure. Can't say I'm really in the mood to form organized, paragraphs, so how about I type a bunch of random thoughts and you just follow along.

So what's new with us? Well, I have bangs and Colby has constipation. How's that for a nice, tidy summary? I went Tuesday and got a haircut. My poor hair dresser, every time I go in there I have a different picture with a new style or color I want to try. No color this time, just bangs. Different for me, but I think I like it.

I guess I should have started Colby back on his MiraLAX a little earlier. When he was on that antibiotic, I discontinued it because that medicine was reeking havoc on his system, if you know what I mean. So now we're trying the extra MiraLAX/prune juice combination to see if we can get things moving. Come on Colby, do some business, because neither of us is really in the mood to take further steps to fix this problem.

Went to watch the IU game this past Tuesday with my BFF and her family. What a game! For whatever my opinion is worth, I thought the officiating was horrible, sucky as a matter of fact. Then all that business about the time clock not starting, on TWO different occasions. How pitiful. But in the end, my Hoosiers prevailed with the victory. Good job IU, loves ya bunches. Makes me warm and fuzzy all over to watch them play this year. 

We're supposed to be taking Colby to a firehouse tomorrow so he can get the grand tour. There was a nurse who was shadowing the nurse that goes to school with Colby. The nursing agency does this so that if nurse #1 has to miss, nurse #2 could go to school with him. Yeah, we all know that would NEVER happen around here. If Colby's nurse had to miss, either I would go to school with Colby or he would just stay home. But they insisted on a nurse doing the shadowing, so whatev. Anyway, turns out the shadowing nurse is also a fireman, and he invited us to take Colby down to the station. Hoping tomorrow the weather is okay for us to go.  

My dad bought an MP3 player and asked me to set it up for him (sigh). I was like, really Dad, an MP3? Couldn't you have bought an iPod instead, since we have that, along with an iPad, and I totally know how to work iTunes and set up an iPod? Guess not. It's still setting here beside my keyboard. But for all that he does for us, the very least I can do is get this thing up and going for him. That'll be a project for this weekend.

We're supposed to be going to Cincinnati Children's on Monday and Tuesday for Colby's second batch of palmidronate infusions. Colby doesn't have school next week so it's a good time to get it done. It's pending on his pre-labs, which I guess they will take tomorrow afternoon after we get home, and if they have a bed available in the TCC.

That's it for now. I'm hungry and my supper awaits. Going to hook up Colby's eye gaze and see what he has to say. Lately he's been talking about animals, the last couple days it has been butterflies in particular. Who knows where that's coming from, but I love that he's discovering new words on his ECO.

JUST COLBY AND MAMA, DOIN' OUR THANG

Colby was back to school this week, and did very well. Had a couple chokey-chokes here and there, but nothing that wasn't easily handled by his nurse. Yesterday his class went on that field trip I had vetoed, the one to Incredible Dave's. Sent Colby to school and he was able to hang out in a middle school classroom for the day. I'm looking very forward to him moving up to the middle school side next school year.

Colby's new eye gaze was delivered today. Woo hoo. The speech therapist has already moved all the files and programs from the old one to the new one. Hopefully the new one won't freeze up and will run faster than the old. His nurse called while they were at school today and said the portable pulse/ox was acting up. Just perfect. Still haven't heard about the new suction machine or CoughAssist machine. Sometimes, okay often, I could just bang my head against a concrete wall when dealing with Colby's supplies and equipment. Have I mentioned that before, lol? The other night Colby said, "more Spongebob said me" on his eye gaze, that was pretty funny. Not so funny, he went to his sports page tonight and said, "U K good." I about crapped my pants. He knows better. I think he does that stuff to annoy me. It worked. Yesterday there were 5 of us in his room: Colby in his bed, regular nurse, another nurse to flush his port, the speech therapist, and me. He was doing eye gaze and said, "my women, all gone, good." Actually he said "my women, all gone" twice. Okay, now that's freakin' hilarious. What a way to tell us too many people in my room, someone needs to get out and give me some space. Seriously love that boy.   

Monday and Tuesday I didn't feel all that hot. Not full blown sick, just enough to make me have the major blahs. I took a 2-hour nap when Colby was at school Monday. I've done that, like, never, but it was exactly what I needed at the time. Yesterday I took my daddy out to breakfast for his birthday, the big 7-0. We went to Cracker Barrel, of course. Where else do 70-year-olds want to go?! Also went to Mass to get my ashes while Colby was at school. I had to wait around here today for FedEx to deliver the eye gaze today. Made my dad a pineapple upside down cake for his birthday.

That's a few tidbits of how our week has been. Colby's nurse is back there giving him his IPV and cough treatments. Think I'll read to him a few minutes before we hit the sack. More from us in a couple of days. 

BALL GAME YAY, EXCITING-GRAMMYS BOO, BORING

Colby is going back to school tomorrow. I think that's a good idea. It is, isn't it? He's been on his antibiotic for 6 days now. He still has a tremendous amount of secretions/snot/whatever you wish to call it. I have suctioned his mouth and nose more times today than I care to mention. He was do for a trach change tomorrow, but we went ahead and did it tonight. But he has no fever, acts like he feels fine, and his trach has stayed clear. So we shall see. It'll be fine, won't it?

I have a confession to make, so here it goes. I dropped Colby yesterday. Ok, it wasn't a real drop, maybe more of a plop. Or it was sort of a dump actually. Regardless of what you call it, it sucked. I was trying to transfer him from his bath chair to the couch, which is something I've done, on my own, a blue billion times. And this time it just wasn't working. I couldn't hold his head and he started sliding, and sliding. I don't know how, but he ended up going plop, face down into the couch. You can only imagine how freaked I was. I just knew I hurt him, or his trach was going to be messed up, or I broke a bone because of his low bone density. I checked him over from head to toe. Stretched him out. He never cried, or whimpered, or winced, nothing. He was un-phased. I cried hysterically for over an hour, but Colby, just fine. You'd never know he took a tumble. So if you're going to tell me to stop picking him up by myself, save your breath. Trust me, I'll never take the chance of that happening again. God love him, that Colby is a one tough stinker, that's for sure.

I'm watching the Grammys right now, although I don't know why. I'm quite unimpressed with it all. Think I'll go read to Colby for a few minutes once his nurse is done with his cough treatment. I was impressed, however, by IU's performance today against Ohio State. Lovin' me some Hoosiers. They played awesomely awesome today. Colby even watched the game with me. For some reason he wouldn't have anything to do with eye gaze today. I mean nothing, he just wasn't going to do it.

Guess that's about it. Colby and I took it easy yesterday. That's a nice way of saying we didn't do diddly jack crap. I went to Wal-Mart tonight once his nurse got here. I've been asking myself why ever since. It was a mess. For some reason, it was packed. It looked like the week before Christmas in there. I almost just walked out, but there were some items I needed for Colby, so I toughed it out. Got him the cutest t-shirt. Well, Colby didn't need that, but I thought he might have just wanted it, so I got it for him.

I'll let you know how Colby's school day goes tomorrow. Keep your fingers crossed. Later, gators.

SNOT, SNOT AND MORE SNOT

That pretty much sums up our little world over the last couple of days. Tuesday and Wednesday were pretty rough for Colby. Slight fever, tons of gunk and secretions/sinus drainage. He was whiny and pale, and you could just tell he felt crappy. Hard to believe that much stuff could come out of that little pea head of his! We were alternating IPV and cough assist treatment, then 4 hours later did saline nebs and cough assist treatment, then 4 hours later back to the IPV, etc. He's on Omnicef, which means discontinuing his Miralax and starting him on a probiotic for diarrhea control. So far that situation has remained under control, thank goodness. We ain't got no time fo dat, do we Sweet Brown? I did go to work yesterday, but cut the day short so I could get back home to sick boy.

Today things are much better. No fever. His color is better. We're not suctioning near the amount of secretions as earlier this week. Colby seems to be acting a little more chipper. It's a beautiful day here, so the nurse and I got him up in his chair and took him for a little stroll around the parking lot. I thought some sunshine would help him feel better more than anything else. Also gave him a bath and got his bedding changed. Hoping for continued progress over the next few days so he can get his butt back to school on Monday.

It's been a 3-ring circus around here, with Colby as the ringleader and his nurse and me as the clowns. I swear sometimes I think we could be a sitcom. Just the way we work together sometimes is a trip. Her help has been invaluable today, though. I've been up 3 times a night over the last 2 nights doing Colby's cough treatments, making me a little more scatter-brained than normal (is that even possible.) I put a load of whites in the washer and wanted them to soak. I have a portable washing machine, and made the mistake of unhooking the hose from the faucet and just letting it hang in the sink. Well, I wasn't paying any attention and it dropped on the floor. What proceeded to happen after that was a huge amount of the water in the washing machine pouring out onto the floor, and the dining area carpet, and the hall carpet. It was everywhere. I'm talking walk on the carpet and water smooched up between my toes. This was at 7:15 this morning. And of course I don't own a mop. So I text Colby's nurse and said hey, would you please stop and get me a mop on your way over this morning? I turned on 3 fans, said screw it, and went back to bed. Nothing I could do without a mop or a ShopVac, really. The crisis is over now. Water in kitchen mopped up. I borrowed the maintenance guys' ShopVac and sucked mucho amounts of water out of the carpet. Fans still running full blast. It'll be okay, I guess, eventually.

Equipment update: still waiting to hear from insurance on the new fancy-schmancy CoughAssist machine and new, quieter suction machine. Also looking into funding sources should these items be denied by insurance and Passport. The good news is both his new Colby's power chair and eye gaze machine have been approved! Now that's freakin' fabulous, cartwheel-turning news to share for sure. I've told Colby about the eye gaze, but I'm not going to tell Colby about the power chair. I want it to be a surprise. The wheelchair dude told Colby's physical therapist that the chair should be ready for delivery in the next couple of weeks. Fantastic! Colby's speech therapist thinks maybe we'll have the new eye gaze by the end of the month. Also fantastic!

Okay, that's it for now. Colby and I are going to curl up on the couch and watch Ellen. She's a trip, and Colby will actually watch it with me. Impressive, huh?

NOT SO TERRIFIC TUESDAY (Sick kid, frowny face)

Where to start, where to start? My boss called me last week and said the boss-boss (regional manager) was coming in town Friday and wanted to have lunch with us. I said no can do, don't have a nurse until 5:00 on Fridays. She calls back, says boss-boss said to just bring Colby. I said no can do, it's 10 degrees outside and I don't get him out in the winter except for school. I jokingly said, but hey, if you all want to grab something and come over here, that's fine. She called me back and said the boss-boss said sure, they'd do it! Actually it was great. It gave me a reason to get up off my butt and clean around here. They brought Panera, one of my absolute favs, and stayed a little over an hour. They helped break up the monotony of a cold, dreary winter day, so it was all good.

Saturday I went to church with my BFF, then we went out to eat and to watch the IU game. You know, the game where the then-rated #3 team, Indiana, beat the then-rated #1 team, Michigan? You know, the game where they were tied once I think, but other than that Indiana was in the lead the entire time? The game where Indiana looked sooooo darn tough? Yeah, that game. We watched it over in Indiana, and I was in heaven being around other IU fans. Not many of those over here in the 'Ville. Cold beer. IU game. BFF. Had an absolute blast.

Sunday was Super Bowl of course. I didn't really care who won or lost the game, but you have to watch because it's the Super Bowl, right? I had all the pre-show stuff on the TV. Colby was sitting up in his chair with his eye gaze in front of him. He kept saying Spongebob, Spongebob. I kept saying Colby, if you want to watch Spongebob, use the remotes button on your eye gaze and change the channel. He kept saying Spongebob. I said here let me show you. Then I showed him the remotes icon on his eye gaze and said look Colby, here is how you change the channel. The very next thing he said on eye gaze was, I knew that. Well okay then, Mr. ColbyRuss SmartyPants. It was a stubbornness battle. I wasn't about to change the channel for him, and he wasn't about to change the channel himself. Then he started crying. Really, Colby, is this necessary? We both won in the end I guess. Eventually we put him down on the couch and put away the eye gaze. I hung out with him on the couch, and he seemed content for a long time just to watch what was on. But of course he got his Spongebob before the night was over.

Yesterday Colby fell asleep during class. I should have known this was a red flag because my child never takes naps. Like, never, ever. I assumed it was because he stayed up and watched history's longest Super Bowl. Funny thing is, 2 other students in his class fell asleep, too. So the teacher turned off the lights and said okay, let's have a little nap time! I went in to get Colby up this morning. I don't know how else to put this without being gross. There was a large glob of yellow/green snot coming from his nose to his slobber rag, and his heart rate was way too high, like in the 130's when it should be in the 90's. Plus he looked really flushed. Well that's just dandy, I knew right then he was sick. Sure enough, he had a fever. So far the nastiness has stayed out of his lungs, so I'm calling it a sinus infection. We're on full-blown Colby-is-sick protocol around here. This involves getting him on an antibiotic. Increasing nebulizer and cough treatments to every 4 hours. Giving extra fluids. Monitoring his vitals more closely. Giving him 1000 kisses. Letting him rest, he's had lots of Spongebob and today he took a 1.5-hour nap. Yep, he's sick. Disinfecting every knob, handle and anything that doesn't move in Colby's room. Frequently changing out suction catheters and tubing. We wrote out a schedule for the day, and it seems every hour there's a this-will-help-get-Colby-better thing to do. No problem. Whatever it takes to get my sweet boy back to being that sweet, silly, stubborn boy I adore.