ALMOST SHOW TIME BOYS AND GIRLS

We had a great weekend. Saturday Colby and I both got haircuts. The nurse and I cut his here at home - really, really short. I did a little get-ready-for-the-hospital packing. We hung out and relaxed the rest of the day/evening. Sunday I went out with friends for brunch and Bloody Marys. Just seemed like the thing to do. The nursing agency sent out another new nurse for a meet and greet and orientation. Really? How many nurses are we going to have before we have enough? I can tell you this. We have 5 currently, but they're all part time, and not all of our shifts are filled. This would be fine with me except we'll be home from surgery before you know it, and we'll NEED the help then. I won't just want nursing help. I have no idea if we'll be granted extra nursing hours or not for a while after we get home. And I have no idea who will be filling the shifts. Oh well, I'll worry about that later when I have to worry about it.

Today was spent packing for the hospital. And holy moly, there's a lot to pack. But I think we're ready! For the most part. There are things that always have to wait for the morning of, until you use them one last time, but overall we're ready to get this party started. Not much else to say I guess. Colby is tucked into bed. The nurse just walked out. Time to take a long bubble bath with the wonderful peppermint and eucalyptus, stress-relieving bath stuff my BFF gave me. Up early tomorrow. Have to be at Cincinnati Children's by noon. Oh goodie. Actually I'm so ready to get this over with, you have no idea. Colby is going to do great, I know he is. He's one tough kid. Of course I'll be blogging frequently, since there is little else to do while your kid is in the hospital. Thanks to everyone who has called, texted or come over in the last few days. I know Colby has the prayers and good vibes of many wonderful people coming his way. Seriously, thank you all so much for caring and loving us. I believe in the power of prayer, I really do. Go, Colby, go. You got this, sweet boy.  

IT'S FINALLY FRIDAY - WOO HOO AND YEE HAW

Colby has this reoccurring spot on his left ear. Most of the time it just looks like a callus. Every now and then it looks like more of a bed sore. It'll get bigger, goopy, open, nasty. I know, TMI. Well, you guessed it, the goopy nastiness is back. Popped up several days ago, and I've been freaking the freak out ever since. If Cincinnati thinks it's significant, Colby's surgery could get cancelled due to his history of MRSA. We've been religious about cleaning it, putting medication on it, trying to get it to heal. It looks much better, but we only have 3 more days before we head to Cincy Children's. Is there a patron saint of ear sores?! We really, really, really need that thing to clear up completely before Tuesday.

I've been trying to have positive thoughts about this surgery. First of all, thank God for Cincinnati Children's Hospital. I know sometimes there are still screw-ups, but there is no other place I would want to take Colby for treatment/surgery. Another good thing, Colby will be a one-and-done. One spine surgery, not multiple surgeries/lengthenings. So that's another positive, right? I have super fantastic parents who will be there with us every step of the way. I hate dragging them through all this, but sooooo thankful they're willing to help. I couldn't imagine sitting in that hospital with Colby by myself for days at a time. And with any luck, Colby will be able to get rid of that stinking heavy, uncomfortable back brace. That will be a huge plus. Last but not least, I've had wonderful support from other SMA patients and parents who have been through similar surgeries. Wanted to give a shout out Thank You to all the SMA mommies who have given me information and shared their kiddos' experiences. So yes, I'm a complete nervous wreck. I'm scared something will happen and the surgery will get called off. I'm scared of Colby getting some nasty infection, C-diff, pseudomonas or some other nasty hospital bug while we are there. I'm scared of the pain he will experience during recovery. However, I'm trying to also find the good/benefits in all this. Trying, really trying.

Speaking of spine surgery, the ortho nurse called today. They've moved Colby's surgery time from 11AM to 9:15AM. That will matter to the people who are travelling up to be there during surgery, but really doesn't affect Colby and me. We have to go up on Tuesday so we'll already be there. I think it's good they've moved the time up some, less waiting around on the morning of. See, another positive.   

I managed to get through working 5 days in a row without breaking a machine or having some sort of meltdown while in my office. I should get a smiley face sticker for those feats, since I usually manage to do both. But I kept my cool, stayed focused, and packed pills like a mad fool. Not sure when I'll be able to get back to work. It'll all depend on when we get home from the hospital and how Colby's recovery is going.

The nurse just got finished with Colby's night routine, so I'm going to read to him for a bit before it's sleepy time. Our latest reading adventure is a Hardy Boys mystery. I'll text later in the weekend and let you know if my nerves are still holding up. I'm thinking no, but we'll see. Tomorrow we get to sleep in and I can't wait. Sleep in goooooood and we better get all we can in the next few days, 84 hours to be exact, not that I'm counting.

THIS WEEK IS MORE THAN HALF OVER - I THINK I CAN, I THINK I CAN

I'm trudging through the week. That stupid headache I had didn't go away until Monday afternoon. That night Colby and I went over and had dinner with his nutritionist. She and I have become friends over the years. She is one of the sweetest people I've ever known, and you can't have too many of those types of individuals around. Plus she offered to get us Panera, so heck yeah I was in. Hello, Fuji apple salad! No onions, no tomatoes, of course.

The nursing agency is trying to jack around with Colby's schedule, and I'm not liking it one bit. The new day nurse was supposed to work Mon, Wed, Thurs and Fri this week. They called me last Friday and said they were pulling her from Colby's case on Monday and sending out another of his nurses to work. Yeah, another nurse who has worked nights only and doesn't know Colby's morning routine! But I agreed to it and just went in to work later once I knew the nurse was settled in on Monday. Then the nursing agency tells the day nurse they want to pull her off Colby's case AGAIN on Friday. WTH?! She was assigned to be Colby's full time day shift nurse. How is she supposed to learn Colby's routine and get better at taking care of him unless she spends more time with him? She stood up to the nursing agency and said absolutely not. She said you either send me to Colby's like I was originally scheduled, or I'm not working anywhere on Friday. Good for her. She's tired of them jacking her around, too. So now we're back to the original schedule and she'll be here the rest of the week.

Tuesday Mom and I took Colby swimming. That'll be his last time for quite a while. (Big sigh). Then once the night nurse got here, I headed in to work. Nothing like overwrapping hemorrhoid suppositories in a cold corner office at 9:00 at night. I was thinking ah yes, this is the life indeed. Actually I was really thinking thank goodness I have a job with flexible hours. There are not many places I could work with Colby's schedule, the nurses' schedules, etc. Then once the nurse got here this morning, I was right back to packing those pills. But the work week is half over. I hate leaving Colby, but Lord knows we need the money. Plus I won't be working for a few weeks in the near future, so time to go in to the hospital, pack those pills, and be grateful I have a job.

The spine nurse from Cincinnati Children's called today. She wanted to remind me that it was a week before Colby's surgery and that we needed to start his pre-surgery routine. I got a chuckle out of that. I felt like saying, lady, not only do I know it's 6 days before we go to Cincy, it's also 140 hours pre-surgery! The pre-surgery stuff is no big deal really. We just have to give him a bath every other day with Dyna-Hex antibacterial soap, put Bactroban ointment in his nostrils twice daily, and give him MiraLax to insure he has a BM every day. Even though we don't have to, I'm also putting clean sheets on Colby's bed after his Dyna-Hex baths. If there's anything I can do at all to prevent Colby getting an infection, I'll do it.

Then the conversation got interesting. The spine surgeon was discussing Colby in a pre-surgery meeting of some sort. They have decided to do a "final fusion" on Colby. Usually with spine rod surgery, you have the initial surgery, then have multiple surgeries after that to lengthen the rods as the person grows. Then once you're done growing, or I should say once your torso is done growing, they will go back in and fuse the rods one last time. I was excited because they were going to do this new technology on Colby for the lengthenings where they put in magnetic rods, then use a remote control to lengthen. No additional surgeries to lengthen. Pretty cool, huh? Colby would've been the 2nd patient at Cincy that the surgeon used this procedure. I was very excited that Colby wouldn't need multiple surgeries. Now I guess we don't even have to worry about that. It'll be a one-and-done! I'm trusting the surgeon on this decision. The only experience I have to go on is that of other SMA patients. I do know it's around this age that kiddos start getting their final fusions (Colby will be 12 next month).

So that's the scoop for now. Counting down the days and hours I have to work, and the days and hours before we head out for surgery. Looking forward to seeing friends over the weekend and spending time with my sweet boy. More blogging as soon as I have anything else interesting to say. But you know me, I can always think of something to talk/blog about. Sayonara for now, blog readers.  

CAN'T ALWAYS GET WHAT YOU WANT, CAN YOU?

Friday we (the nurse and I) ran Colby out to the pediatrician here in town. Cincinnati Children's has a pre-procedure form that the pediatrician had to fill out. Kind of a pain in the fanny if you ask me. Colby has already been cleared for surgery by every specialist in Cincy he's ever seen. Oh wait, nobody asked me, so we just did it. Friday night I actually cooked. I made roast and all the fixings. Not a bad effort on my part, I must say. My BFF Kim and her little doggie Kizmo came over for a visit. Trying to squeeze in some girlie visiting time while I can since we're going to be very, very busy and tired for the next few weeks.

Yesterday I worked. Actually I'm working all this week. At first I thought this was a great idea. My boss is on vacation and asked me if I wanted to cover for her. At the time, many weeks ago, it made sense. Make a little extra money, stay busy, keep my mind off Colby's surgery. Now I think it's a crappy idea. Changed my mind! Too bad, too late. I want to stay home, rest, spend time with Colby, pack for our upcoming hospital stay. Too bad, too late, gotta get my butt to work. I'm sure Colby will survive this week better than I will! I want to stay home and take care of him, dangit, did I mention that already? Wednesday we start putting the medication in his nostrils and giving him the baths with the special soap. The medication is twice a day every day and the baths are every other day a week prior to surgery. This is to prevent infections while in the hospital because he has tested positive for staph, both MRSA and ORSA in the recent past.

Today is Father's Day of course. We (nurse, Colby and I) headed out at the butt crack of dawn and had breakfast with Dad. I'm so very lucky to still have my dad here with us. He is the most wonderful dad I ever could have asked for. I've always been a Daddy's girl, and I don't see that changing anytime soon. I used to be the absolute apple of his eye, that is, until Colby came along. Dad adores that sweet boy, and I love seeing them interact together. It's almost like they have their own language - so cute to watch. I'm also very fortunate to have a kind, loving stepdad. Couldn't have custom designed a better one. He's always been there for Colby and me, no matter the need. Then there's Colby dad (insert large eye roll and big sigh.) What can I say? I know he loves Colby. I know it could be worse. He does pay his child support on time, never been late ever. He does come and see Colby, even if it's only 3 hours a week. I know plenty of kiddos who get much less than that from their fathers, which is so sad. However, I will never understand his unwillingness to accept Colby's diagnosis. Dude, it is what it is. Suck it the fuck up and move on. It hurts me to the bone that he only sees what Colby can't do, and doesn't appreciate the things Colby can do. That's too bad. And that's his problem, not mine, anymore. Thank God Colby does have his grandpas around. Poor kid is exposed to way too much estrogen with his mama hovering over him, nurses, teachers and therapists.

Sorry if this blog has typos are grammar errors. I'm fighting a terrible headache. Not sure why, but starting at about 2:00 today my head starting pounding. Luckily I don't get headaches like I used to, just an occasional one. Guess I'm due. But it's free to go away at any time. With that said, I'm closing up this update for now. The nurse is back there giving Colby his cough treatment. She leaves at 10:00, and I'll be in my bed by 10:02. Have to get rested up for this busy upcoming week! 

FOUR HOUR DRIVE - 15 MINUTE APPOINTMENT - LOVE IT

Well, today was a total waste of time and effort. We (my dad and I) took Colby to Cincinnati Children's for his cardiology appointment. It went exactly as I knew it would. We drove 2 hours to the hospital. Spent maybe a total of 15 minutes in Cardiology. Loaded Colby back up in the van and drove 2 hours home. The cardiologist walked in and asked if I had any questions. Uh, no, or I would have asked them weeks ago. We undid Colby's back brace. She listened to Colby's heart. Then she said she reviewed the results of his Echo and EKG. Everything looked good, she would clear Colby for surgery, and we were done. Dad didn't even have time to run down to the cafeteria and grab a sandwich. I'm trying to stay positive. The good news is there is nothing wrong with Colby from a cardiology standpoint. Never has been. The good news is we are one step closer to getting this surgery over. The good news is my dad and I took Colby up there and back with no problems. The good news is I didn't throat punch anybody over having to go to this stupid fucking appointment today. Oh yeah, the good news runneth over.  

Colby is officially on summer break. Can't say this summer is going to be a barrel full of chuckles, but I'm sure he's happy not having to get up at 6:50 to get ready for school. He's been driving me crazy with his eye gaze lately. All he wants to do on it is change channels. Channel after channel after channel. Beep after beep after beep. Oh well, no use in pressuring him into doing something he doesn't want to do, like use the eye gaze for actually communicating his needs/wants. Guess he'll do that one day when he's darn good and ready.

The nursing situation has been interesting around here lately. Since the first week of May, we've had 4 new nurses. One nurse went to school with him. She doesn't work for the nursing agency we use at home, so she's not taking care of Colby anymore. Strike 1. We've had 3 new nurses here at home - 2 of them are working out nicely. The other one was not reliable and brought way too many of her personal issues into my home, so she had to go bye-bye. Strike 2. I hate it for Colby, absolutely hate it. It's stressful for me meeting and training new nurses, but I can't imagine how Colby feels with all these different people taking care of him. So now we have 5 nurses working for us. Hopefully they'll all stay with us for a while. Please, dear Lord, just let them stay around a while. I'm here to tell you, the grass is not always greener. You think, oh, if Amy and Colby had nursing help, their lives would be so much easier. Wrong! Well, somewhat right and somewhat wrong. We've had many issues over the years with the nursing agency and miscommunication, along with some real cra-cra, incompetent, unreliable nurses. But then again, we've had some really good ones. The bunch we have now, they're good.

Last Saturday was a great day. I went for pedicures and lunch with my BFF. We've been trying to do that since her birthday, which was the first week of March. So nice to get away and have some girlie time. Then we had no night nurse, just Colby and me. We started watching The Hobbit. Nobody told me that stinkin' movie is almost 3 hours long. Good grief. We watched about an hour and a half of it. We watched some more of it tonight. Maybe the 3rd time will be the charm in getting it watched.

That's our update for now. Tomorrow we (new nurse and I) take Colby to his pediatrician here in town. He has to fill out some pre-surgery form for Cincinnati Children's. I have a whole binder of info I need to read to get ready for surgery. Haven't started that yet. Me? In denial? Perhaps. Don’t judge me. We've waited and waited for this surgery date to roll around. Now it's here and I'm in complete freak out mode. But tonight I'm also in complete sleepy mode. Going to tuck in kid and get some sleep. Good night blog readers.  

BUSY DAY - SWIMMING, PORT FLUSH, UNWANTED CALLS

One of these days I'm going to blog and say hey, everything went just fine today. No nursing issues, no medical issues, no Apria issues; it was a zippity-doo-dah kind of day.

Well, today is not that day. Actually, yesterday was a pretty darn good day, so I can't complain too much. I got a lot of stuff done at home while Colby was at school - errands, phone calls, laundry, etc. I went and had dinner with one of my favorite SMA mommy friends. She is a hoot, and we always have a great time together. Get us away from our kiddos for a couple of hours, no telling what will happen. But we were very well behaved, for the most part, from what I remember. Just kidding. Sort of.

Okay, here's the poopy part of the week so far. I'm supposed to talk to a specific person at Apria to order Colby's supplies. You know, to make the ordering process easier and free of errors (note sarcasm.) I've called my person and left voice mails both yesterday and today. Still don't have those supplies ordered. Whatever. Oh yeah, this is making the ordering process so much better. Maybe she'll call me tomorrow when I'm at work and we can play phone tag all week long. Sounds super fun, doesn't it?  

Then today I get a call from Cincinnati Children's. NOT the call I was waiting for, saying to bring Colby on up early for surgery. This chick from Neurology calls me and says ummm, Colby hasn't been cleared for surgery from Cardiology. I said ummm, what the crap are you talking about? Colby had an Echo and an EKG done, which were perfectly normal. According to the ortho surgeon's nurse, Colby was cleared for surgery weeks ago. She said well let me check on it. Long story short, we're going to Cincy next week to meet with Cardiology. She apologized over and over, saying it was totally Cincy's fault. She's so sorry, blah, blah, blah. Yeah well, sorry don't sweeten my tea, honey. Am I pissed off to no end? You betcha. Is there anything I can do about it? No. Should I just suck it up, deal with it, and move on? Yep. So that's what we'll do. But I'm still very pissed and upset about it, and I'm pretty sure it's going to stay that way.

But you know what always makes it all better? My sweet boy Colby Michael. He makes my good days better and my bad days bearable. We took him swimming today. I love watching those skinny little legs of his kick around in the water. I know that has to feel so good for him. Then when we got home Walgreen's Infusion came out and did his monthly port flush. When the night nurse got here we gave him a bath. He's so stinking cute. His school nurse said he was driving a lot at school today. Just when I thought he wasn't able to use that switch anymore, he's been doing better with it lately. NEVER count that boy out, that's for sure. He only has 3 days of 6th grade left. Wow, I'm not kidding, this school year has flown by.

Guess that's it for now. Colby's nurse just got done with his night routine. My SMA mommy friend gave him some Captain Underpants books. I'm anxious to see if he'll like them. We finally got The Hobbit read, so now it's time to move on to The Hardy Boys, Harry Potter or maybe Capt. Underpants. Who knows which one Colby will choose. Stay tuned to see which one.  

JUST A LITTLE SUNDAY NIGHT BLOG

The nurse is back there getting Colby ready for bed. There is absolutely nothing on TV. I mean nothin'! Seriously, football season cannot start soon enough. The only thing I can find to watch is Misery, and I've seen that enough times already. Although her vocabulary is impeccable, "You're just another lying ol' dirty birdy." She's getting ready to hobble him. Oh man, that's gotta hurt!

 What's new around here? Not much. Our week greatly improved after a shaky Tuesday and Wednesday. We went to a graduation party yesterday back in my hometown. I debated on whether to take Colby. I'm always worried about accessibility. Not to mention getting him in his wheelchair and loaded up to go anywhere is always quite the time-consuming task. But the weather was perfect, and I didn't see the sense in him lying around in his bed all day. Plus I'll admit it, I'm awfully dang proud of my sweet boy, and I just wanted to show him off a bit. Nothing wrong with that, is there?

Sundays are not exactly my favorite day of the week. They start out great. I watch CBS Sunday Morning while getting Colby up for the day. Love that show. Then Colby's dad shows up for his big 3-hour weekly visit with Colby, and my mood seems to change. Gee, can't imagine why. For the most part we get along, but really, the less I have to deal/communicate with him, the better. So then I leave while they visit. I might go for a walk, do the grocery shopping, go have brunch with friends, go to Mass, anything to give them their time together without me bugging them. Then I come back at 1:30 and leave at 5:00 for Mass. Guess I shouldn't complain. At least Colby's dad comes to see him. At least I have nursing and get to go to Mass. Yeah, it could be worse. Guess I'll stop complaining now.

Can't think of much else to blog about at the moment. I could tell you how worried and stressed I am about Colby's upcoming surgery, but I'm pretty sure people have figured that out by now. Tomorrow I need to follow up with the nursing agency. I've requested "emergency care" for Colby when we get back from his surgery. We get 16 hours/day of nursing currently, but the SMA families I've talked to say we'll need 2 people to help take care of Colby 24/7 for the first couple weeks after we get home. There will be a certain way to change him, transfer him, etc and I'll need help with that apparently. Depending on others totally sucks, but we have to do what we have to do. Colby has 5 more days of school and only 24 days until surgery. Yikes, our summer will be over before you know it. Adios for now, amigos.