NO CATCHY TITLE, JUST AN UPDATE

How is our week going you may be wondering? Pretty darn great. Colby had a good week at school, which in turn meant that I had a good week doing whatever the heck it is I do to fill my day. Two good weeks of school in a row, great job kiddo. Today Colby had a field trip. They took all the elementary classes from his school to a local movie theater to see Finding Nemo 3D. We had the whole theater to ourselves, probably about 25 to 30 students, plus teachers, aides, nurses and some parents. Trust me, quite the adventure. Colby did great. He sat up the whole time. I looked over at him during the movie. He just looked so darn cute. He had his 3D glasses on over his regular classes, his vent on, letting out the occasional jabber. Oxygen and heart rate steady as could be, the stinker. Don't think for one second I ever take days like this for granted, because I don't. We've been through way too many shitty days for me not to recognize a wonderful one when it's happening.  

Colby also got a massage today. He's getting massage therapy through Hosparus once a month. Then his night nurse and I gave him a bath. Totally relaxed after that he was. He was practically sleeping when the nurse was doing his nighttime routine.

I won't get into all the details, but sadly and officially we're not getting a house anytime soon. Just not meant to be right now, and I'm cool with it (not really). I've totally accepted the fact (it sucks terribly). However, now I can move forward, switch gears and get some other stuff done. Called the shelving company, and I'm going to go ahead and get the shelving system put in Colby's room. That will make a huge improvement in his room, giving us more storage, better arrangement, more room to maneuver Hoyer lift, wheelchair and bath chair around, etc. And I'm going to start looking for another van. Can't believe we'll be saying goodbye to the Turdmobile sometime in the near future, but it's time. I'm ready for some changes.

This chick is going to bed. Good night all. More tomorrow probably. 

BACK TO TCM AGAIN

Let me start by saying, my kid is a stud. He had a great day at school J Sooooo very happy for him. What are the chances he can go to school a full 2 weeks in a row? We'll see, I'm hopeful. Thursday he has a field trip. I've gone on several of them with Colby before, but I thought this time I would ask him if Mommy could go this time. You know, he's a big 10-year-old now and may not want his doting mama around when he's out with classmates. But he's a sweetie and said yes I could go. I even had his nurse and speech therapist ask him while he was at school. I'm in, lol!

Things I got done today while Colby was at school: made 8 phone calls and sent 3 e-mails. Went through a buttload of mail and various annoying paperwork. Also walked 3 miles and went to the grocery. Things I didn't get done: bathing, combing my hair or laundry. Actually getting ready to get a shower and hit the hay when I'm done blogging.

Yep, it was a Trach Change Monday. This time I let the nurse do it. She has changed out trachs before, just not Colby's trach, so we thought it would be good practice. We also took Colby outside for a while in the swing. It was perfect swinging weather. I don't think Colby's oxygen ever dropped below 99. He was loving it.

Tomorrow will be much of the same. Once I get Colby on the bus and off to school, there is still more mail to sort through and phone calls to make. Need to run some errands, too. Just the regular blah blah. And of course he's going to have a great day at school, so I won't have to worry about needing to go and pick him up. Right? Absol-freakin-lutely.

THE WEEK IN REVIEW

I was given a gentle reminder tonight at Mass that I haven't blogged in a while. I know, sorry! So here I am, and let me fill you in on "what up" around here.  

MONDAY: Colby went to school. For some reason his power chair decided to stop working right when we were loading him up for school. Yeah, I know, I was saying what the crap, too. So he had to go to school in his old, way too small manual chair. I went to the dr and got my thyroid follow-up appointments made. Oh goodie. October 22 - 26 I'll be busy with all that lovely mess. I "only" have to be away from Colby 3 days this time, not 5.

TUESDAY: Colby went to school. Also it was my birthday. My dad and I went to Cracker Barrel for breakfast. Let me just say, their apple strudel French toast is so stinkin' good I could hardly stand it. I wanted to pick up the plate and lick it clean.

WEDNESDAY:  Colby went to school, and I went to work. "Uneventful" day, just like we like it.

THURSDAY: Colby went to school. Colby's dad and I went to his school for a meeting with the principal. There are a few issues that needed to be addressed. I hate having to do stuff like that. I'm really not a confrontational person. Don't laugh, I really was nervous. But I felt much better after the meeting. Kevin the wheelchair dude came by to pick up the loaner that Colby was testing with the new driving system, and he was nice enough to fix his current power chair.

FRIDAY: Dad and I took Colby to Cincy, well actually their Kentucky offices, to meet with the ortho surgeon. I was not looking forward to that appointment. Not at all. Long story short, Colby is having VEPTR surgery in the Spring. Don't have a date yet. That stands for Vertical Expandable Prosthetic Titanium Rib. Wow, I typed all that without having to look it up. They'll attach 1 device to Colby's ribs, then another to his ribs and pelvis. The device will help straighten him up, and hopefully this will work and he won't have to have spine fusion surgery down the line. There are several other SMA kiddos that have either had it done or are scheduled to have it done in the near future. It makes sense for Colby because the curve of his spine isn't that bad, only 38%. But it's the way it's curving that's jacking up his lungs, airways and chest wall, hence the surgeon thinks VEPTR is a better option. I'm just glad he said Colby could wait to have it done. Hopefully we can keep Colby healthy and stay OUT of that hospital for a while. I went out to Wick's for my birthday dinner with BFFs Amy and Pam. Cold beer, hot pizza, great friends, can't beat that with a stick.

So if you paid attention to the above, you noticed something special about this past week. Colby got in his first full week of school. Yay, yippee, yah hoo. Colby only goes Monday through Thursday to school. Took us 5 weeks into the school year to do it, but by golly he did it! Hopefully his MRSA is cleared up and he'll have another good week at school.  

Other than that, not much going on. I worked half a day yesterday at the hospital. Today I watched the Colts lose. Don't want to talk about it. Keeping my fingers crossed for a stress free, uneventful, fun, beautiful weathered week. Is that too much to ask?!

THE WEEKEND IS OVER? BUMMER DUDE

We've had a great weekend. Wish it didn't have to end. Friday I took some "me" time. My dad, mom and brother treated me to a spa day. My BFF helped out, too, because she was able to get my services at a big discount. So I went for the gusto, baby. I had a massage, facial, mani and pedi. I had 5 fabulous hours to myself. I put my phone on silence, gave it to the lady who was doing my treatment at the time and said, unless this phone says Pam (Nurse) when it rings, it can wait! Of course I would never turn off my phone in case sweet Colby boy needed me. My TLC was much needed and I loved every second of it. The Permobil wheelchair dude came back with the new driving system so Colby's PT could see him drive. We get to keep the chair until next Thursday, woo hoo. I've had Colby out in the parking lot every day so he can practice driving. Or in his case, play with the chair elevator, leg rest and recline functions. Leave it to my kid. I think this new system will be a great option for him.

I've spent the weekend de-MRSAing this apartment. All of Colby's equipment has been wiped down, along with the filters, tubing and other parts changed out. Did 6 loads of laundry, including all of Colby's bedding. Even washed the decorator towels I leave hanging in the bathroom. Threw out all the Z-Flo covers and wiped down the Z-Flo pillows, etc. Frickin' MRSA. I'm sure I'll be doing it all again in a couple days. Stupid MRSA, go away.

Put on your praying pants tomorrow and give us a shout out if you think about it. I'm sending Colby to school. I've sat him up every day for the last 4 days, no problems or oxygen drops. Tomorrow will be his 4th day on an antibiotic. Maybe this will be his first full week of school? Good gravy I hope so. I'm tired of this running to the hospital shit. I forgot to call the bus compound on Friday to let them know Colby is getting back to school, so I'll just take him and his nurse to school before going to my dr appointment. Oh what the heck, I'll go ahead and pick them up, too. We're gonna take it one day at a time.

I've been a little frazzled lately. Hahahahaha, oh my, that's the understatement of the year. Let's face it, I've been a complete mess lately. I guess all the stress from the last few months has caught up with me. But the last few days I've felt much better. I heard something on the TV the other day. Can't remember the show. It was saying how you can't get rid of the stress in your life, so you have to figure out a way to manage it. It was a light bulb moment for me. So here's the bottom line. If I didn't have the SMA-related stress in my life, that means I wouldn't have Colby. And that's a thought I can't entertain even for 1/10 of a second, so I best be figuring out a way to handle all the bullshit that comes with such a complicated disorder. I can do this. I'm a strong, smart, independent woman (hear me roar haha.) I have God on my side. I have family and friends to help. This week is going to be a bear, but I refuse to lose my mind over it. Take it one day at a time, heck one hour at a time if necessary. Like how I give myself pep talks? Hey, whatever works. Somehow, some way, I'm going to stay calm and get lots accomplished. To be continued...

SO, TO SUMMARIZE...

It's been a wild and crazy week. We get home from The Center for Courageous Kids camp last Sunday afternoon. Camp was a blast. Colby got do arts and crafts along with cooking class (his choices). He also got to swim for the first time since being trached. He also went horseback riding again. It was a busy, busy weekend. I think the best part of camp is seeing all the other SMA kiddos and families. How nice is it to go somewhere where you're the norm, not the different one? Hmmm, it was amazing to see how much better Colby drove his wheelchair when he was around other kiddos driving their chairs. Colby had 2 oxygen drops on Sunday while at camp. I figured it was either mucous plugging because he wasn't on his vent humidifier or because he was just tired. Well, here's where it starts to get interesting...

Sent Colby to school Monday morning. Got a call they were calling for an ambulance. Colby's oxygen dropped into the 40's. Okay, that happens sometimes. But this time is STAYED in the 40's, even after trach changes and 3 nurses helping him. Long story short, we went to Kosair ER. He was stable, oxygen in the 90's, off oxygen, looking good. Then he had a little spell where his oxygen dropped to 87 and I said nope, no way am I taking him home. I just knew something, although I didn't know what, was up with my kiddo. So we were transferred via ambulance to our home away from home, the Cincinnati Children's PICU. Yes, our second hospital stay at Cincy in a month. We went to the PICU because they didn't have a bed on the trach unit (TCC). A bed became available on Tuesday so we moved to TCC. Colby was acting more like himself by Wednesday afternoon so they discharged us. No answers really. A dr. who is very familiar with Colby said it was probably a lower airway plug, not a trach plug, that had to move around and work out. Sounds reasonable enough.

Then Kosair called yesterday and Colby's sputum culture showed MRSA. Uuuuuggggh, not MRSA! I asked her, you mean ORSA, because Colby has tested for that before. She said no, MRSA, and called him in a prescription for Bactrim.

Oh my, what craziness, huh? Can't we get through one week of school without some major Colby catastrophe? Just 4 little days, a total of 20 hours of school-related stuff that goes smoothly. You know, the way it's supposed to be. Kid gets up for school, kid gets ready for school, kid gets on bus and goes to school, kid's oxygen stays in the 90's while at school, kid gets back on bus and comes home from school. How flippin' hard can it be? Apparently it's a very tough challenge for the Russ household.

Since getting home from the hospital Colby has been doing well. I kept him home from school Thursday, he'll go back Monday. Yes, he's going to school. I didn't get the call about the MRSA until yesterday. Started Colby on Bactrim. He's had 2 doses so far. Colby's nurse will be here in a few minutes, so I'll wrap this up for now. More later as soon as I get a chance.

THANK YOU to all who hang in there with us. I know so many people care about both of us. Knowing we're not in this big bad SMA world alone keeps me from going completely nutsy insane. Okay, Colby's nurse is here, 3 minutes early, gotta love it.

TGIF - TGICW - TGITFCW

Thank goodness it's Friday. Thank goodness it's camp weekend. Thank goodness it's time for cooler weather. That sums up my thoughts for the moment!

Wednesday was a busy day. Sent Colby to school then I went to work. I had the nurse call me every 2 hours for a Colby update. Couldn’t help it, I was worried to death about him. He had a decent day, not a great day. At least I didn't have to leave work and go pick him up from school this time. Later that night, did our routine trach change and gave Colby a bath. They had to do an emergency trach change up at Cincy on a Wednesday, thus TCM is now TCW (trach change Wednesday for those of you who don't speak Amy.)

Yesterday I ran some errands while Colby was at school. I'm pleased to report Colby had a great day. Yes, finally. Maybe it's just taking him a while to get back in the school groove. I've been asking him every night, Colby, you ready for school tomorrow? Every night his answer is NO. Not sure what that's about. I think he's going through a streak of laziness. TDB, kid, you're going to school if at all possible, end of story (too damn bad, more Amy speak.) Put gas in the van, took $96 to fill up that terd. Had to go get snacks for our road trip to Scottsville, Kentucky this weekend. It's SMA weekend at The Center for Courageous Kids, and I'm very excited we're going back again. My BFF "Aunt Kimmie" is going with us again, too. This is the camp where Colby got to go horseback riding. I'm just thrilled to take him somewhere in the van besides Cincinnati Children's. And I hear the weather is going to be better, i.e. cooler this weekend, correct? Hallelujah, thank goodness, somebody is watching out for us. I don't think we would have even been able to go if the weather was going to be as shitty as it has been this week. Got Kim and I pretzel sticks, pretzel crisps, Nutter Butter Bites, Laugh Taffy, and chocolate/caramel squares for the ride down there. It's a 2.5 hour drive, but hey, you gotta have snacks or it's not a road trip, right?

Okay, better get going. Colby's nurse just walked in. She's going to get him up for the day while I finish packing up the Terdmobile. Keep your fingers crossed Colby does well this weekend. For some reason I've been really worried about him lately. (Gee, I can't imagine why!!) It'll all be fine, right? I mean, you know, everything will work out just right, isn't that correct? There's no need to worry that he'll plug, or bleed, or bleed that causes a plug. It'll all work out just fine. Just super-duper fantastic. We'll all have a great time. I think that will be my mantra for today, it'll be fine, it'll be what it'll be. It'll be fine, it'll be what it'll be. It'll be fine, it'll be what it'll be…repeat with me…

DÉJÀ VU ALL OVER AGAIN

Sent Colby back to school today. It was just like before. Started him on a Tuesday. He had an okay day, not a great day. Now I have to work tomorrow and honestly, I'm scared shitless to go. What if something happens and I need to go pick him up? I talked to my boss, she said just do what I need to do. If I don't want to go, don't. Colby's nurse tells me to go to work, that she'll be fine and Colby will be fine and the day will go fine and everything will be just fine. Well, I don't feel fine, I'm very frustrated right now. All I wanted for Colby was to have a good school year, but it has pretty much sucked so far. Between the sudden, where is this coming from bleeding and the plug he had today, yeah, it's stinky. All I can say is it's at least better than last school year, right? Last year Colby spent the entire month of September in the hospital, along with some of August. I know the weather is incredibly miserable right now. It's one of those ozone action days where the air is so thick it sucks the life out of you when you walked outside. I'm sure that's not helping Colby's respiratory status at all. All of this is just so NOT how I wanted our August to end and September to start. I want school to be a pleasant experience for Colby. I don't want us all on pins and needles every time the bus pulls away. Something has to give.

Then the Permobil wheelchair dude came over with a larger chair for Colby to try, along with a new driving system for him. Yes, something else to try so that hopefully Colby can learn to drive a power chair independently. We can't give up I suppose. The one Colby tried is called single switch scanning, or something like that. He uses a little microlight switch, that's all. No setting up a switch on this side to drive and a switch on the other side to turn. There's a little screen in front of Colby and an arrow. The arrow moves and when the arrow is in the direction Colby wants, all he has to do is activate the microlight switch and boom, away he goes. It took him less than 1 minute to discover reverse. He loved it! The screen also has a mode button where Colby can use his switch to make the seat go up and down, tilt the chair back and forth, and other chair adjustments. Took Colby less than another minute to find the elevator switch. He must have moved that seat up and down 6 or 7 times. He worked that chair just like he works that eye gaze. Goes back and does the same thing over and over, usually the thing you really don't want him to do. I told Kevin the wheelchair dude, as soon as Colby finds reverse, you can forget the other directions. Do I know my kid or what?! Kevin kept asking him, where are you going? You can't see where you're driving, Colby. I had to laugh. It was great to see Colby have a little better control over something. Hoping, praying that this system works for him. We'll probably trial it again before ordering it for sure on the new wheelchair.

Okay, that's all I got. I totally have Colby on my brain tonight. Trying to decide whether or not to go to work tomorrow. If I go and they call me to pick up Colby, I'll feel like a big stinky terd for not getting there faster. If I don't go, then I've missed a day of work (pay). Making adult decisions is no fun sometimes. Just no fun at all!

SATURDAY SCOOP

We got home from the hospital on Tuesday. Or at least I think it was Tuesday. My days have been running together lately. Shortest stay in the PICU ever, only 6 measly days. We just can't stay out of that place, can we? Now Colby is doing very well. Decided to let him rest a few more days, and he'll go back to school this Tuesday. He had a tiny bleeding incident on Wednesday. I was in the living room and his nurse was back in his room with him. She said Amy come look at this, Colby is bleeding again. I about crapped my pants. There was just a bit of blood, then it went away as soon as it started. Crapping of the pants unnecessary. We've been trying different ways to suction Colby orally, using a little sucker, a BBG through the nose (that's a big booger getter for those of you who aren't familiar with the term) and just all around staying out of Colby's mouth unless he absolutely needs suctioning.

It's great that there is nothing "wrong" with him. No bleeding disorders, no real trauma or damage to the base of his tongue. But we were all sitting around at Cincy, including the many ENT docs who looked at him, wondering what the crap happened! People have theories, good ones, but I guess we'll never really know what caused the bleeding and why the bleeding wouldn't stop. Praying, keeping my fingers crossed, hoping, doing the non-bleeding-mouth dance that this doesn't happen again. It was downright scary!

I have felt like crap since we've been home. Had a splitting headache for 2 days. Don't know if it was stress related (who, me, stressed?!), weather related (rain coming in/sinus trouble), female related or if I was due to have a damn headache. But it was a doozie, not a migraine, but bad enough to put me in a foul mood. Didn't help that on Wednesday I made 14 phone calls. Yes, 14 f-in phone calls. Follow up on where the hell are his supplies from Apria. Yes, that drama continues. Follow up with the shelving people.  Reschedule appointments for both Colby and me. Get nursing restarted. Blah, blah, the list goes on. It always takes a couple days to get back on track after a hospital stay, even a short, dinky 6-day stay. And tired, oh my Lord I can't get enough sleep.  

The last couple of days have been much better. Went to dinner with a friend last night. Hey guess what, did you know there are 2 Clucker's restaurants in southern Indiana? Well, I sure didn't. Until I go to the one in Jeff, walk in, sit down, order a beer, wait for Brandy. She calls and says where are you. I say right in front of the bar. She says I don't see you, are you at the one on Charlestown Rd? I said oh, there's one on Charlestown Rd?! Be there in 10 minutes! I'm such a genius sometimes.

I worked a half day today. The nurse and I gave Colby a bath. I did a cardio tape, yay me. Now we're going to curl up on the couch and chill together for a while. Sleeping in tomorrow. Or at least I hope to sleep in. That usually depends on Mr. Colby's sleeping patterns, you know. Maybe I should keep him up later than usual so he'll be tired! Mean mama.