MELTDOWN PREVENTION = DEEP BREATHS

You know how you have something scheduled way off in the future and you think, ah heck, that's so far away, I don't have to worry about it now. Then it hits you that weeks/months have passed, and now the time has come to start dealing with it? Colby's VEPTR surgery, for example. Yep, it's crunch time, only 36 days until surgery. Unless of course they move his surgery date, again. Colby also has tons of pre-surgery appointments, i.e. trips to Cincinnati, him missing school, making hotel reservations, coordinating all this with the ortho department, etc. Need to reach out and talk to some other SMA families that have been through this surgery so they can give me some tips on what to expect. Working on getting some extra nursing hours for when we come home from the hospital post-surgery, I know we'll need them. Summary: I'm freaking the freak out about it!! Inhale, exhale. Inhale, exhale.

Hey, guess what? This may shock you to hear this, but Colby's supply order for the month is messed up. Whaaaat, really, wow can't believe it!! Ordered 12 items. So far we have received 4 items correctly, 2 items the wrong amount, and are waiting on the others. Same mix-up as last month, instead of sending 4 CoughAssist filters, we got 4 boxes. Congrats, Apria, really. You all must work really hard to be the total fuckups that you continue to be. Words can't explain how much I loathe dealing with this company. Inhale, exhale. Inhale, exhale. Let's move on.

Colby's Monday-Friday day nurse, still sick. She needs off this week also. I tried to get the firefighter/RN dude that has shadowed with Colby several times to go to school with him. His only availability is tomorrow. I took Colby to school yesterday and handled his medical needs. I've been told I can no longer go to school with Colby and be his caregiver, as I could be a "liability." Ironic, when Colby has blood pouring from his mouth unexplainably, or if he's blue and his oxygen is low, the school calls me and wants me to get there as soon as I can to help. Sure as heck not a liability then, am I? I've been told I could raise a big stink and get this changed, but I'm not. I'll save my energy to fight some other battle. Whatev. Inhale, exhale. Inhale, exhale. I just hate it because Colby is already missing so much school with appointments and surgery.

So if it seems I'm a little wigged out at the moment, damn skippy I am. I'm not completely jaded, though. I know we have many, many good, wonderful things in our lives. Colby is healthy! Well, as healthy as he can be, he's "Colby healthy". This time last year we were in the middle of an excruciating 37-day hospital stay when Colby had the flu. At least we're not dealing with that, right? God has blessed me with the most wonderful, giving, loving, fantastic, helpful parents on the planet. When I thought I would be taking Colby to school this week, they were like, what do you need, how can I help? They will be right by my side to help with Colby through his surgery. I'm not kidding, they are THE BEST parents anyone could ever hope to have. And if I'm not mistaken, spring is finally here? Good deal.

Okay, off to make phone calls, send e-mails, and get Colby up for the day. It's all going to be fine. Just need to remember to do what I can to move things along, but ultimately you have to turn it over to God, and it's going to be what it's going to be. Dory has just keep swimming, just keep swimming. I have close your eyes. Inhale, exhale. Inhale, exhale.  

DID EASTER UP RIGHT, SPRING BREAK NOT SO MUCH

Colby has been up for a while already today, so I went ahead and gave him his meds. He's back there watching TV. I'm in the living room, chugging coffee, watching CMT videos and now blogging. Here it goes:

This past Saturday we had a busy (and fun) day. Colby and I went to an end-of-chemo party for a friend of ours. His nurse Rhonda accompanied us. Can you think of a better reason to celebrate, after months and months of treatment, you're DONE with chemo, how fantastic! The party was in a big gym. They had the party set up at one end, so Colby was able to do some power chair driving at the other end of the gym. He also had his first gambling experiences, guess now he's a true Catholic? They had pull tabs and Bingo, with proceeds going to the Susan G. Komen Foundation. He seemed to like it all and was perfectly content doing something a different. My little boy is maturing for sure.

Saturday night Colby's dad and stepmom came over and we decorated Easter eggs. Yep, all of us, just one big happy family. Actually it wasn't bad, we all get along, especially if it's something for Colby. He was way into it for a little over half an hour, then he seemed to lose a little interest. That's 10-year-old typical, right? After they left, Colby and I also decorated sugar cookies to give out at church on Easter.

Easter was a great day. Colby looked so handsome in his purple shirt and tie! We were up and out the door right on time. Should have gotten there in plenty of time so church could start on time at 10:30. Key words there, should have. We were all loaded up. I put the van in reverse, looked at Colby, and he just looked and sounded a little "off". So I went ahead and gave him a couple sets of the CoughAssist there in the van. Glad I did because I got a lot of stuff out of his trach. THEN we were heading to church. The congregation was nice enough to wait on us. Now, you have to understand, the congregation on Easter Sunday included 10 individuals. That's not a typo, not 100, but rather 10. And 4 of those were Mom, Kenny, Colby and me! After church we went to Mom and Kenny's for lunch. My stepbrother and his family came down, so Colby was able to see his cousins for a while. And dangit, I forgot to get their picture together. That's the 2nd time they've all been together and I forgot to get a pic, shame on me. We got back home around 3:30, just enough time to get us out of our dress clothes, give Colby his afternoon cough treatment, then it was time to watch the U of L game.

Colby is on spring break this week. Are we going anywhere or doing anything exciting? Heck no. Colby's nurse is still sick, so she took off the whole week. My mom came over Monday to help around here. I went in the kitchen and there she was, standing on a chair, organizing my Tupperware cabinet. Not that I'm complaining, go Mom go! She helped me get Colby in his chair and we went outside for him to practice his driving. And again, he did not follow directions, and that's okay. He's 10 and he's stubborn, I get that. But during his driving free time, he almost ran into another parked car. I won't tolerate that. He has to know better. If he doesn't know better, there's me in the background saying stop, Colby, you need to stop, stop now! He got put in timeout again. Don't judge me, just sayin. This time I brought him inside and sat him in front of the TV and kept the TV off. So he got to look at a blank screen for a few minutes. Some people think it's cute and funny that I put him in timeout. Some people think it's mean on my part. I think it's neither. I have expectations for Colby. If I didn't think the child could do this, I'd let it go. I'm not giving up on him learning to drive that power chair. Yesterday, my BFF Pam came over and we got Colby out for a while. Took him to the mall because I needed to get a bday present. That was our big outing for the week. Yay us, a 1.5 hour trip to the mall, what a fun spring break Colby is having (sarcasm).

Okay, dishwasher is done. Guess I'll throw in a load of laundry and start getting kid up for the day. My mom is coming over to help again today. Wonder what cleaning project she'll find around here today?! Actually I'm looking forward to her scurrying around here, dust rag in hand. Is that bad? If it is, then so be it, I'm bad. I can live with that.    

WHICH PLAN ARE WE ON NOW?

It's been a wild and crazy week so far, but not necessarily in a party on Wayne and Garth, aren't we having a blast, good way. Monday was pretty normal. Colby went to school. I piddled around here and got some housework, errands and laundry done. The nurse that goes to school with Colby hasn't felt well lately. Even though she went to the doctor and has been on antibiotics, she's struggling. Usually Monday is her long day with us, 13 hours, but she didn't feel like staying after they got home from school. No problem, I know she needs the rest. Tuesday was a very exciting day. My mom and stepdad are home after a 4-month hiatus basking in the warm southern Texas sunshine! Yippee, we've missed them terribly. My mom was so excited to get back to the cold and snow, NOT. They came over Tuesday after Colby got home from school. I hugged the stuffing out of them, 4 months is a long time to be gone dangit!! I know Colby was happy to see his grandma and grandpa, especially because they came with gifts ha-ha. He got a cool new Spongebob hat and a Texas Longhorns t-shirt. We're looking forward to going to church with them for Easter. They gave me the choice of Easter dinner, ham and potato salad or roast and veggies. I picked roast. Nothing is better than roast, potatoes, carrots and mushrooms baking away in the oven, then smothering it in gravy. There will be gravy, right?! I'll whip up either some deviled eggs or a broccoli casserole probably.

Yesterday is when it started getting interesting. Colby's nurse called in because she said she was feeling worse. This meant Colby couldn't go to school and I couldn't go to work. But what can you do? I know she's sick. This is the first time in 16 months she has ever missed work. We certainly can't have sick people around Colby this close to surgery, so yes, sicky nurse, stay away! All sickies stay the heck away! Even if you think you might possibly become halfway sick, stay away from Colby! I ain't playing. We were able to scramble around and one of Colby's other nurses had some time, so she came in and stayed with Colby so I could go to work. Then Cincinnati calls, oh boy, not good timing. I really like the surgeon's nurse, she's easy to talk to and has always returned my calls, keep me informed, etc. So Colby's surgery date has been moved from May 13 to May 15. Actually this works better. He has to be admitted the night before to go on TPN, which means originally we would've been going up Sunday, May 12, Mother's Day. His surgery time has also been moved from 7:30 a.m. to 9:00 a.m., another good thing. Won't have to be up at the butt crack of dawn. I spent probably 20 minutes on the phone with her lining up pre-surgery appointments, the labs Colby will need, etc. Guess it's time to get our duckies in a row.

Today is kind of a mess, too. Colby's nurse is still not well, so Colby is home from school again today. I have a doctor appointment, so again, we had to call around and see if we could find a nurse to stay with him so I could go. Luckily we did, and I don't have to cancel. The nurse that was supposed to watch Colby tomorrow during the day so I can work, guess what? Yep, got a call from the nursing agency she isn't feeling well either. She's going to the doctor today. So I may or may not have a nurse tomorrow during the day, which means I may or may not be able to go into work. If nothing else, we do have a nurse scheduled tomorrow night, and I could go in and work then. Thank goodness I have a pretty flexible work schedule. This scheduling stuff really gets on my last nerve sometimes. So much work, so much hassle, then if someone gets sick it's all shot to hell anyways. All we can do is the best we can do. Plan A, B, C and sometimes D. Sometimes throw out the plan book and wing it. It's all good in the Russ hood. Better get going. I hear some jabber-jabbers from Colby. Probably saying, hey Mama, get in here and start getting me up for the day. I'm on my way, sweet boy.

AND HERE IT IS, THE FIRST UPDATE OF THE WEEK

The nurse and I just got done with Colby's bath. She's back there giving him the fluff and buff - pj's on, trach care, teeth brushed, etc. I'm waiting for my quinoa to get done, so it's a good time to do a blog update.

Last Tuesday was an interesting day. I noticed the day before Colby's white goldfish looked a little sluggish. Sure enough, I looked in the tank Tuesday morning, and we had a floater. Had to send the poor little fella to the big tank in the sky. I guess that's the glory of goldfish, they're easily replaced, which is exactly what we did. I don't think Colby is none the wiser on the whole deal. Then I get a call from Colby's nurse while they're at school. She thinks she has pink eye. Well farts! Just dandy. So I go and pick them up from school. Let her leave her shift early so she could get it checked out. That situation is under control, too, and luckily neither Colby or I got it.

Friday we took Colby to the ophthalmologist in Cincy. Well, Cincy has outpatient offices in northern Kentucky, and we were lucky to go there. Cuts about 14-16 miles off our trip one way. Colby did awesomely awesome! Of course I kept a super close eye on him. Kept him suctioned frequently. Constantly checked his numbers, the look on his face, listened to his trach. I pulled out all the tricks to guarantee we had a smooth trip this time. They had to dilate his eyes, so I asked if there was a room where we could let Colby lie down a while, feed him, change him while the drops did their thing on his pupils. That seemed to help a lot. Colby never has been a kid who could sit up in a wheelchair for long periods of time. He didn't want to cooperate with the eye dr. Ophthalmologist kept saying here Colby, I need you to look at my light, Colby. Hey Colby, lookie here buddy. It was pretty funny actually. I was like yep, that's my boy. His nearsightedness and astigmatism are a little worse in his right eye, but the eye dr. said we don't need to get him new glasses right away. Now it's time to turn focus to the upcoming pre-surgery appointments. Not looking forward to it. Yuck and double yuck.

Colby has been working on his power chair driving at school, at here at home when weather allows. The nurse and I had him out in the parking lot this past Saturday. He's getting really good at driving to a target. Stopping, not so much. I guess he's so excited to finally be able to move forward he doesn't want to think about stopping. Oh yeah, and he doesn't follow directions worth a crap either. Directions like Colby, stop. Colby, that's a parked car, you need to stop, NOW. Good thing that child is cute.

And last but not least, how about those Hoosiers, baby?!?! Yesterday's win was u-g-l-y you ain't got no alibi ugly. Several of us went to BDub's to watch the game. I was certain I was going to crap my pants or have a panic attack before it was over. But a win is a win. Survive and advance, as I was told. On to the mighty Orangemen on Thursday. Go IU, Fight, Fight, Fight. Elite Eight bound, I hope, I pray, I wish, I beg, I want, I need, I desire, I respectfully request.

Better wrap it up for now. Much to do before bedtime.

COLBY IS A STUD, ST. PAT'S WRAP UP, OTHER INTERESTING TIDBITS

So proud of my sweet boy. He has been doing great the last few days. I'm very impressed with the time he has been able to stay off his vent. Last Friday he stayed off an hour while sitting up in his chair, that's amazing! Then Saturday afternoon he was able to stay off almost 2 hours. That's the longest chunk of time he's been able to stay off his vent since being trached. See, he doesn't need that silly surgery after all, right? He's lying on the couch right now, watching Spongebob (you surprised?), off his vent. Numbers are 99 oxygen and 98 heart rate. Really, can you get much better than that? We've started a new "rule" around here. I use that term loosely. But still, it's about time people have expectations for Colby and also about time he works toward them. So we took him outside to practice driving his new power chair. The rule is, for 15 minutes, he needs to concentrate on nothing but driving to a target without stopping or changing directions, and stopping on command. In other words, following directions. Then after that, he can have free time to play with the seat elevator, spin around in circles, whatever his sweet heart desires. Let's just say he was able to concentrate a lot more on Friday when his nurse was here to help than on Saturday when Grandpa was here. I think Grandpa was a bit of a distraction for him, but that's understandable. Of course we were unable to go outside yesterday since it rained, then poured down rain, then iced, then snowed, then rained some more and was freezing cold. Stupid weather.

I went out with a couple girlie friends on Saturday to celebrate St. Pat's Day. We met at O'Sheas and believe me, it was a little O'Crazy up in there. People were decked out in green wigs, goofy glasses, green tutus, and the green beer was flowing freely. I wore some hideous green nail polish and my BFF had on green fish net hose. And we were some of the more modestly dressed individuals there! Nurse got off at 10:00, and I was home by 9:45. Even though it was an early night, we sure did have fun while we were there. Only 364 days until next year's St. Patrick's Day celebrations. Can't wait, so much fun to be had, woo hoo.  

Who's watching The Bible on the History Channel? I watched it for the first time last night, missed the first 2 episodes. It definitely kept my interest. I'm always interested in seeing how others interpret the Bible. Now I want to go back and watch the others. Did dudes really wear that much eye liner back in biblical times?! I was talking to a friend this morning and said you know, I swear when you first glanced at Satan tempting Jesus in the desert, he sort of reminded me of Barack Obama. Is that crazy for me to think? Apparently not. It's quite the internet buzz today. I'm not making a political statement in any way, just making an observation and casual conversation.  

The laundry is caught up around here, for a change. Even put away in the appropriate closets or drawers. Also spent hours, and I mean hours, over the last few days going through mail and paperwork. That big mess is straightened up for the most part, too. Now maybe I can get back to exercising a couple days a week, and I want to start going to Mass again. Haven't been in 3 or 4 weeks and I really miss it. So important to find time for that kind of stuff, too.   

Going to wrap this up for now. Colby needs to do some eye gazing and I want to get it done before the Biggest Loser season finale comes on. Totally love that show! I've got a beer and nachos bet with a friend that Danni will win. She has picked Jeff. Guess we'll know in about 3 hours from now. Catch you later, blog readers.

SQUEEZING IN AN UPDATE, THEN BACK TO BEING SUPER MAMA

Colby is off to school. I've got a load of whites soaking in the washer. Working on my 2nd cup of delicious coffee for the day. I have a rather long list of chores and "to do" items that need attention, which I'm feeling a bit stressed about, so how about I spend some time in Denialville and just blog instead?

Colby is doing well, doing great actually. He's been able to spend significant time off his vent. The other night he stayed off almost 2 hours. Way to go Colby stud! I attended his IEP meeting this past Monday. Okay, let me just say up front, I hate IEP meetings. Always have. Nothing like seeing your son's disabilities listed and put in print. But hey, we can't help him and adapt accordingly unless we identify his strengths and weaknesses first, right? We've carved out some time each day at school so he can practice driving his power chair, and I'm happy about that. We also decided to try some homework, which is something he's never done in the past. I think it's a great idea, especially since he doesn't go a full day and misses lessons. I've been working with one of his nurses, teaching her how to use the eye gaze, put in on the floor mount, etc. I'm hoping on the nights she's here she'll be able to help me get his homework done. It's about time people started having higher expectations for Colby, and about darn time he started meeting those expectations, or at least try. I wish I could take a week or so and work on nothing but his eye gaze. There are so many cool things that we could program on it. It's an amazing machine, does everything but make you a PB&J sandwich!

Also been working on getting Colby's pre-surgery appointments made. He has an ophthalmology appointment scheduled next Friday. That has been scheduled for a year. I've noticed Colby crossing his eyes lately, especially when watching TV, so we definitely need to keep that appointment. With the pre-surgery stuff, he now has 3 extra appointments/trips to Cincinnati in addition to the eye dr. I'm trying to get it down to 2 extra, just really hard to get all the doctors scheduled on the same day. I guess we'll do what we have to do. Colby's VEPTR surgery is only 60 days from now, and believe me, I'm totally freaking out about it. I would give anything not to put Colby through this. Just thinking about it as I type this upsets me and makes me tear up. He's doing so well, I keep thinking he doesn't need this surgery, he'll be fine without it. But he does need it. He really does, and that's the bottom line. So it's time for me to suck it up, put on my big girl panties, stay strong, and do whatever it takes to get Colby through it. He can't see me upset over it, and he won't.

Took Colby to the St. Patrick's Day parade over the weekend. As you can see from the pic, we were all decked out in green garb, ready to get our parade on. One of his nurses and my dad went with us also. I don't have a stitch of Irish heritage, but have always enjoyed decorating for St. Pat's, making corned beef and cabbage, and drinking a couple green beers of course. Colby has a wee bit of Irish in him through his daddy's side of the family. Usually the weather is crappy for the parade, but it was perfect this year.

Time to wrap this up for now. I need to go to Kroger and pick up some prescriptions for Colby. Also need to make a few phone calls, my absolute fav thing in the whole wide world to do, and fill out new patient paperwork because I'm going to see a new endocrinologist tomorrow. She comes highly recommended by some of my Facebook friends, so we'll see.

MARCH ALREADY? WHAT THE CRAP?

Sitting here watching Big Bang Theory, laughing my socks off, waiting for the IU game to come on. Just enough time to squeeze in an update.

Last Thursday was a great day around here. The nurse and I took Colby to the local pet shop (not thrift shop) so he could pick out his goldfish. I was totally bummed because they didn't have any puppies for Colby to pet. They did, however, have some little bunnies. Colby didn't care for them one bit. He seemed to like the ferret, which I found totally disgusting. Man, those things stink! So we're now the proud owners of 2 no-name hermit crabs and 2 goldfish, one of which is white. Who knew goldfish were any other color besides gold?! Seriously, I didn't know that.

Then 4:00 rolled around and ta-da, Colby's new power chair was delivered!! We were all so excited. Oh my, it's the most fabulous, cool, tricked out wheelchair you've ever seen. Love it, love it, love it. It took 2.5 hours to get everything adjusted, every type of support you can think of. He has a tray on the back now to hold some of his equipment. I can't wait for him to really get outside and practice the new driving system. I took him out for 15 minutes on Friday and the same on Sunday, but it's colder than crap here so we just couldn't stay out long. Everyone has been asking what we're going to do with the old power chair. The answer is I don't know. I'll figure it out later.

Colby's supply order for February (yes, I know it's March already) has been rolling in. They sent 2 shipments. Yep, you guess it, the order is still not complete. I'll be sending a lovely e-mail to the respiratory therapist at Apria before I go to bed tonight. We finally got the new brand of trach for Colby. They quit making the brand he was on, Arcadia, in December, and we just got the new brand, Bivona. Here's the best part. Colby is supposed to receive 4 cough assist filters a month. Apria sent 4 boxes. That's probably, oh I don't know, 96 too many filters. They're going to have to come and get them because I flat out don't have the room for them here.

We didn't do much over the weekend. I had lunch with some of my girlie friends. Always a great time. Colby's nurse and I changed out all of his filters and tubing. That always takes a while, that kid has enough equipment to sink a barge. Laundry, laundry, still not done with the laundry. This apartment needs a good cleaning. Not sure when that's going to happen, just saying it needs to happen.

Talk about torture. Got my Girl Scout cookie delivery today, but no cookies for me until Easter. Hard to say which ones I'll tackle first, the Samoas or the Thin Mints. Okay, who am I kidding, both I'm sure.

That's it for now. Got to go watch my Hoosiers now. More later.