T C M

That stands for Trach Change Monday, which is much easier for me these days. Think I just lacked the experience and/or confidence and needed to give it a little more time. Now if I can just figure out the best/proper way to clean the trachs. It's one of those things, ask 10 people you'll probably get 10 answers on how to do it.

Colby got a hermit crab for his birthday and he absolutely loves that thing. It's actually kind of cute, painted yellow and has a Spongebob sticker on his shell. Wait a minute, how do we tell if this crab is male or female?! Should I be saying he or she? We get it out every night and let it crawl around on the couch with Colby. I went to put it up today and Colby starting crying! Guess he wasn't done playing with his little buddy. He's such a trip.

I worked at the hospital for a couple hours today. Then came home and did Colby's trach change while the nurse was here. Then met with some ladies from Hospice. Trying to see if they have any services that could help us out around here. I know they offer some cool programs like pet therapy, massage therapy, music therapy, etc. Colby would love any or all of these. Also trying to see if they can help with getting some supplies. Maybe a volunteer can come out and "play" with Colby, etc. Just exploring our options at the moment.

Colby and I are watching the Olympics, women's beach volleyball currently. Can't say Colby is too thrilled with it. If it doesn't live in a pineapple under the sea, he doesn't see the entertainment value haha. But now it's 9:00, which means IPV treatment, cough assist treatment and the rest of Colby's night routine. Bye for now. 

RUSS WEEKEND UPDATE

Colby and I both survived me working a full week. I even went in for a couple hours last night while his night nurse was here to get some work caught up. Also going in tomorrow to help, just for 3 hours though. And, as the case is with many of you all these days, the money is already spent. Mama needs to get her butt to the eye dr and get new contacts. I'm way overdue. Also need to get to the dentist for a routine visit and cleaning. Way overdue for that also, but no need to rush, especially since I hate it with a passion. We'll tackle the eye dr first, it's the lesser of the 2 evils.

Went out to dinner with some friends Friday night. Then the storms rolled through, and the electricity in the restaurant went out. Oh great. Not only that, we were eating at Clucker's on the River. There was a free concert across the street on the River Stage. So when the rain hit, everyone went running for cover, i.e., heading into the restaurant. Within just a few minutes it was 142 degrees in there. Sent a text to Colby's nurse to check on things, she says they have no electric at home. Some of Colby's equipment runs on a charge and some doesn't. The good news is we have a battery backup. The bad news is the battery backup was with me in the back of the van. By the time I got home, the power was back on. It went out again but only for about 15 minutes or so. Never a dull moment.

Yesterday was our lazy day. I did as little as possible. Colby sat up in his power chair and worked on his eye gaze. He has finally made a decision on the color for his new wheelchair. He chose platinum silver several times. That's the one he chose originally, also, so silver it is. That was our excitement for the day I think. That and working at the hospital on a Saturday night, woo hoo, such party animals we are.  

Today I was determined to get something around here done. Did just a few chores. Got the sheets on our beds changed. Did 2 loads of laundry. Cleaned out the fridge, it was super nasty. Counted up the final total from the benefit. The Women of the Moose's comedy night fundraiser featuring Mike Armstrong, who is freakin' hilarious by the way, raised a little over $3400.00 for our "get a newer/better van" fund!! Thank you to all who donated in any way.

My sweet dad came over tonight and grilled out steaks. My t-bone was ginormous. I'll be eating on that for supper tomorrow, too. Besides watching some of the Olympics, that's our weekend in a nutshell. Colby's night nurse is here now. She helped me finish getting Colby ready for bed. Good night everyone. Mama needs her beauty sleep. Lots and lots of beauty sleep lol.

POST B-DAY UPDATE, IT WAS A DOOZIE

Finally wising up and I'm blogging before I put Colby to bed, not after. What's new with us? Lots!

I worked last Friday at the hospital. Didn't break either of the machines I pack on, however, somehow my printer was jammed. The old take the paper tray out and stick it back in trick didn't work. And of course I'm hooked up to only 1 printer in the entire hospital. They eventually had to call in someone from IT, but by golly, it's working now.

Sunday was Colby's super duper 10th birthday bash. One word sums it up: FABULOUS!! Or maybe stupendous is more fitting. Maybe awesomely awesome is a more appropriate description. You get the idea. We had a great turnout, around 65 of Colby's closest family and friends. We had tons of bright colored decorations, balloons, Spongebob paraphernalia, a cake with Colby's pic on it, cupcakes, appetizers, drinks, treat bags, the whole shebang. My BFF Amy and her daughters made the sweetest video of Colby. I've watched it every day since then, more than once each day! It's so fun to see all that Colby has done and accomplished over the years. This birthday was a biggie. For an SMA Type I child to turn 10 is nothing short of miraculous. And after the bullshit that Colby has been through over the past year, he deserved the biggest, best b-day party we could pull together. We've been opening a few gifts and cards each day. Might as well celebrate for a birthday week, right?! So far his most interesting gift has been the hermit crab that his babysitter got him. It's yellow and has a Spongebob painted on the shell. So now I guess we're officially pet owners haha.

I'm working at the hospital Monday through Friday this week. Took 3 nurses and some schedule juggling, but we finally got enough coverage for Colby so I could go work my hours. I was working late last night, it was about 9:00, and guess what? Oh yeah, you know it, broke the damn overwrap machine. I swear I have no idea how I did it. Nothing special or weird happened. I just changed the bags, which I have to do all the time when packing on that machine, and somehow things got really screwy. So I pulled the old turn off the machine, then turn it back on and try it again trick, that didn't work. I tried cussing at it, that didn't work. I tried calling my boss and having her talk me through fixing it, that didn't work. Luckily she had to stop by work to meet with our big time boss. Long story short, the stupid overwrap machine is fixed. I hate that freakin' thing, I really do. I call it The Beast, and in the 3 years I've worked there, I've yet to tame it!

I needed to make phone calls when I got home from work today, but just couldn't bring myself to do it. Just too tired today. Working and partying like the rock stars we are has finally caught up with me. Getting ready to put Colby to bed and I'm not far behind.

Short-term plans for around here:  reorganize/redecorate Colby's room. Order Colby's new power wheelchair. Get Colby back in school. Find more nurses to fill Colby's shifts. Colby has an appointment in Cincy first week of August (follow-up pulmonary and new appointment with endocrinologist/bone clinic). I have dr. appointment in mid-August with my radiation oncologist. Will schedule 2nd body scan then I assume. Start looking for another van.

Long-term plans for around here:  we don't do those because life is just too dang unpredictable sometimes.

Time to get kid off to bed. If you came to Colby's birthday party, hope you had fun. I know Colby did and I was soaking up every minute of the celebration. Can't believe Colby is 10 years old! Have I mentioned that's a really, really, really BIG deal?! Because it is, what an amazing boy he is. Love that sweet boy to the moon and back!

READ ON, IT'S ALL GOOD

Greetings fellow blog readers. We're having a fantabulous week. The scoop is as follows:

The comedy night benefit was a great success if you ask me. THANK YOU to all attendees and to anyone who donated. Bless his heart, Dad drove over to pick us up. We drove aaaaaaaaaall the way around the Watterson to get to the Sherman Minton to get to Indiana. His idea. Actually it was a good idea, we hit no traffic. We stayed at the Moose for a little over an hour. Had to leave and get home to meet the night nurse at 9:00. It was great to see friends we haven't seen in forever. Also, a big THANK YOU to Mike Armstrong; he is one goofy, funny dude. I loved his act and was kind of bummed we couldn't stay for the whole thing. The benefit raised over $2700 dollars for Colby and me. Time to start van shopping! We'll take this money, along with other money from past fundraisers that I've been saving, and put a big, fat down payment on a newer/nicer van with a different kind of lift and more head clearance. When getting Colby in the van, if you don't lean him all the way back in his power chair, his head scrapes the doorway. That's no good!

We're having Colby's b-day party in the same room as the benefit this weekend. It was hot, stupid hot, really bad hot in there. Maybe it was because there were a lot of people there (smiley face) or maybe because it was 152 degrees outside. Regardless, we're going to have to do something about that. Getting together some fans for Sunday. So, if you're coming to Colby's party on Sunday and you have a fan we can use, seriously, please bring it. Much appreciated.

Another piece of goodness comes from Apria. Can you believe I just wrote that?! Good news from Apria?! You know how much trouble I've had with them in the past but not this week. They sent out an RT to meet with me, at my suggestion, to figure out some way to streamline and/or make getting Colby's equipment and supplies not such a giant pain in my ass. I was ready to open a can of whoop ass on the RT. First time I asked her something about Colby's account and she didn't know, I was going to rip off her head and crap down her neck. But dangit, she was really nice, and she was prepared for the meeting. I was all prepared to let my bitchiness fly, but I just couldn't do it. So we're working together to collect info, make a spreadsheet for ordering, etc. There's just too much stuff to keep track of not to have a system.

Then the next day the Apria RT called to let me know insurance has approved Colby's IPV machine! OMGosh, she's like my BFF now! I just knew insurance would deny the 1st and maybe even 2nd request for the machine, and I have no problem being wrong this time. Not sure when it'll be in, but it would seem soon. That's really awesome news.

Getting geared up for Colby's birthday party of course. Seriously, can you believe that kid is turning 10? The big 1-0. Double digits. A decade. Every time I think about it, I swell up with pride. After all he's been through, what a reason to celebrate. So proud of my sweet boy. Can't wait for family and friends to come to his party and oooo and aaaah over him, tell him how big he's getting (he really is on a growing spurt I think), tell him how handsome and brave he is. He deserves every last drop of love and attention he's going to get!

Off to bed now. Busy couple of days coming up. Later, taters.

I LOVE SHARING GOOD NEWS, SO READ ON PLZ

Well, things aren't too bad around here currently. That's a nice change of pace, huh? Let me feel you in on all things Super Mama and sweet boy Colby:

Nursing is going well. I really like the 2 nurses Maxim has sent to care for Colby. They are dependable. Both have lots of experience. Both, so far, have been very professional. I like, like and like! Of course the nursing agency is having trouble filling in the weekend shifts; I pretty much saw that coming. But that's okay, I'll just stay on the scheduler until he finds us someone. Persistence, squeaky wheel, being a bitch, whatever it takes.   

Colby and I had a very low-key weekend. As in, I didn't even bother to bathe yesterday haha. I did get Colby up in his chair both days and put the eye gaze in front of him. He did explore on it, and that's all I'm asking of him right now. Just give it a try. Today, not so much, but I don't think he was feeling well. His nurse and I got him up in his chair, then I set up the eye gaze. Colby kept saying "more stop, please stop, I more stop, etc" as in he didn't want to do it. Okay, no prob, I've had many friends tell me give the kid what he wants. Took the eye gaze away and then he had a little choking incident. Oxygen dropped to the 70s, but we gave him 2 sets of a cough treatment and then he was fine. So, I guess he really was telling us something was wrong and that he couldn't do eye gaze. Saturday night I did go out. Yes, out, in public, where I had to wear something without elastic, run a comb through my hair, socialize with adults, the whole bit. I had an overnight nurse until 4:30 a.m. and I thought yeah baby, I could really tie one on if I wanted. Well, apparently I didn't want, because I left at 8:45 and was home at 12:30. But I still had a great time! Always great getting together with Henryville peeps.

Did my 2nd at-home trach change today. Easy peasy, no problems, smiley face, 2 thumbs up. Today was one of those got a lot done, I feel like maybe I'll hold on to my sanity after all kind of days. Colby's nurse got here at 8:00 and I decided to go walking. Just went 2 miles, but 2 is better than 0, right? My shins will hate me tomorrow. We also gave Colby a bath. Then Colby's PT and our "wheelchair guy" Dennis came over at 4:30. We started the arduous task of planning out a new power chair for Colby. OMG, there are so many things to consider! The right foot plate, the right head support, whether we do or don't need this or that feature, a vent tray, what do I like about the current chair, what do I not like. They were here for about 2 hours and by the time they left, my brain hurt. I'm going to let Colby choose the color, there are 6 choices. I'm going to put them on his eye gaze and he'll decide. He's old enough to have a say. Whatever he chooses is fine, doesn't matter to me.

If you live locally and want to do something FUN tomorrow night, come to the Sellersburg Moose Lodge. They are so thoughtful and generous to have a benefit for us. Here's the info: Tuesday, July 17, 2012, 7:00 p.m. This fundraiser is a comedy night featuring Mike Armstrong. He is an ex-cop, has been on the Bob and Tom Show. I hear he's pretty darn good/funny. We can all use some good chuckles, right? Tickets are $10.00 per person. All donations will be used for Colby's medical needs and handicap accessibility needs, i.e. we're looking at getting another van very soon. Please help spread the word to anyone who you think may be interested.

Colby is over there on the couch jabbering away. Love it!! Time to get his 8:00 p.m. feeding and meds done. Hope the rest of our week goes as well as our Monday has!

INCOMPETENCE!! ENOUGH IS ENOUGH

Not only could I write a paragraph or blog entry about it, I could write a freakin' book on it! Anyone who has spoken with me lately knows how incredibly frustrated I've been trying to get things done for Colby. It's been like this ever since we got home from the hospital. Now maybe, just maybe, things are looking up, just a little.

Ever since Colby went to the TCC after trach surgery, around Memorial Day, the process of getting a home IPV machine was started. And it has gone on, and on, and on. I've made phone calls. I've sent e-mails. I literally cried on the phone with the chick from Apria, asking her how I could help move the process along. Talked to her today, again, and she tells me she now has the information she needs to submit to insurance! Whaaaat? You mean you had communication with Cincinnati Children's and they sent the right info and you got the right info and now you're going to forward that info to insurance and Medicaid?! There is a God. Of course insurance can totally deny the IPV, probably will, but we can appeal. I'm NOT giving up until Colby has that machine. It'll take the place of the shaky vest, which he hates, and his nebulizer. I think it's much better for airway clearance, especially now that Colby has a trach. So we'll see how it goes. IPV paperwork done and forwarded to Apria, check.

Colby's pediatrician called today. Well, his nurse did. She is simply fantastic! Always professional, always reliable. I had filled out Colby's school papers, all 11 pages of them, then had to forward some of them for a doctor's signature. The nurse called saying they were ready to be picked up. Colby's school papers signed and ready to go to Churchill Park, check.

I called the nursing agency the other day saying look peeps, you told me Colby is approved for 16 hours of nursing a day. I counted it up and they didn't even have half the shifts filled for the month. Not that I want someone "up in here" all the time, but I really could use the extra help right now. Especially week after next when I'm scheduled to work all week while my boss recovers from surgery. Yep, you saw correctly, I'm slowly making my way back to work. Worked a few hours last week, worked today. Then probably 1 or 2 days next week, then for a whole week! Yikes, can I handle it, IDK! Haven't worked since March you know, so we'll see how it goes. I worked 6 hours today and didn't break either of the machines I work on, impressive indeed. Well anyway, once I got home today, the nursing agency called to say they have coverage for a few more shifts. I don't expect them to fill every shift every day, but I think they can do better than not even half, right? So, get back to work, check. Getting extra nursing hours, check. Sweet!

Colby's birthday party plans are in full swing, and that makes me happy, oh so happy!! Can't wait for Colby's big day when he turns the big 1-0!! Makes me gush with pride every time I think about that little, or should I say big, stinker turning 10. He's been through so much and I'm so very proud of him. Gushing, ecstatic mama making big birthday party plans, check.

Still lots to do around here until I feel "normal" again, but I feel pretty darn accomplished at the moment. Love getting items checked off that never-ending to do list. Just wanted to let everyone know we're hanging in there. And for the 1st time in quite a while, I feel like things might just be ok one of these days. Time to get Colbster off to bed, then off to bed myself.

TO-DO LIST IMPORTANT; NOT-TO-DO LIST ALSO IMPORTANT

What am I going to do today? I'm not sure, but I know what I'm NOT going to do. For example:

I'm NOT going to make phone calls regarding supplies. When will we get the supplies I ordered? Why did you send the incorrect supplies, again? Why did you only send this many instead of that many? When will someone pick up these wrong supplies, they're blocking my hallway? Did you get the paperwork you needed to get the supplies? Also will NOT make phone calls for upcoming appointments and followup calls to last week's appointments.  

I'm NOT going through paperwork/mail. I spent almost 2 hours doing that the other night. I at least went through and pulled out the bills that needed to be paid and forms, information I need to work on in the near future. Just not today.

I'm NOT stepping outside unless it's absolutely necessary. Freakin' heat wave has everybody in a bad mood, understandably.

As for my to-do list for today, it's negotiable at the moment. Of course there's taking care of Colby, which is 100% non-negotiable. He's back there doing his shaky vest right now. I know his dresser needs to be cleaned off and organized. That's a fairly easy chore, so I WILL do that. I MIGHT program some more cool stuff on his eye gaze. I MIGHT clean out his toy box. I MIGHT pick out a new book and started reading it. I MIGHT work a puzzle. I MIGHT work on b-day party plans. I MIGHT bathe today, haha.

What I WILL do is take a moment to thank everyone for the continued love and support you give to Colby and me. Some days dealing with the complications of SMA is so overwhelming it's hard to focus or know where to begin. But you all un-complicate things with your phone calls, texts, Facebook posts, visits, offers to help, etc. Right now my peeps, along with the fact that we are NOT in the stinkin' hospital at the moment, are the good areas I need to focus on when I feel those sinking, chest-tightening, I-can't-do-this-one-more-day feelings. And yes, we super mamas feel that way sometimes.

Time to finish Colby's morning routine. I sincerely want to THANK EVERYONE for hanging in there with us and supporting us through the last few months. Let's face it, the last year or so has had some rather sucky moments for both Colby and me. But I WILL try to focus on the good, i.e. family and friends who love and help us whenever possible. That's the good stuff and I WON'T forget it, I promise.