GETTING BETTER ALL THE TIME

Keep your fingers crossed, we may be going home in a day or two. After rounds, and yes, they FINALLY rounded on Colby today, things are looking up. The packing has been out of his mouth since yesterday morning. So we have discontinued the sedation med. Also discontinued the Clindamycin since there isn't any packing. Also moved the vent settings to home settings, good also.

Today's plan is to do CoughAssist treatments at the normal home routine, 4 sets of 5 breaths, but still at the lower setting of 20/20 (normally 30/30). Still not doing IPV treatments, too much shaking around. Don't want to do anything that may lead the bleeding to start. We're being extra careful with oral suctioning. Just getting in the sides of his cheeks really, NOT to the back of his mouth. Using a BBG (that's big booger getter for all you non-respiratory folks) for his nose and that really seems to help pull out the slimy stuff at the back of his nose and hopefully throat.

So that's the report for now. Dad is on his way up & Mom will go home. Hopefully she can stay there & we'll get out of here very soon. I've already done my "let's celebrate, the word home was mentioned in rounds" dance. Colby wasn't overly impressed, probably wished he was still sedated haha. You'd think he'd be used to my craziness by now, huh?

AND MYSTERY, HE'S ALSO BEEN CALLED THAT

Things are a little better in the PICU today, I'm happy, happy, happy to report. ENT came in this morning, took the latest packing out of Colby's mouth. NO active, red blood, just old, nasty brown blood. Good sign. So they've left him unpacked. We're going to start his cough treatments, but are starting at a snail's pace. Not doing IPV at all, too much shaking/jarring. Doing CoughAssist only. Lower pressures than home, fewer sets. You gotta start somewhere. Keep your fingers crossed, throw out a prayer or two that we see no bright red blood.

I don't how it happens, but somehow Colby's feeding recipe and schedule get fucked up every time we're here. EVERY time. Drives me bonkers. I write it down. I tell the nurses. It still is a giant cloud of duh and misunderstanding and are you kidding me. So my best guess Colby is getting some form of food and hopefully his free water today. How hard can it be?!

I'll keep everyone posted on the success/failure of the cof tmts. And the success/failure of  Colby's feelings.

BAFFLING, PUZZLING, RARE

These are the words that have been used to describe Colby in the last couple days. First day of school, fantastic. Second day of school, sucked big wienies. Colby's nurse called me and said, uh Amy, we're suctioning blood out of Colby's mouth, a lot of blood. So I left work and picked them up. We got home. Got Colby comfy. Then his nose started bleeding. My nurse practitioner friend, Tami, came over to take a look. Too hard to see anything, really, because of all the bleeding. Then blood starting oozing out his trach a little. That's it, we're going to Cincy. So we through some necessities in the Terdmobile and away we went. Colby's nurse rode with us, Tami followed. And so the fun began...

While in the ER, ENT tried to do a scope. Too much blood to see source of bleeding. They assumed it was a nose bleed. Put some FloSeal in Colby's nose hoping it would work. It didn't. Trach Unit was full, so we went to our home away from home, the PICU. Honestly, I'd rather go there anyway.

So I'll try and sum this up the best I can. ENT has tried various options with Colby. Bedside scopes, packed his mouth (awful, Colby has to be sedated the whole time), packed the right side of his nose. Took Colby to the OR where ENT did some investigating. They found a tiny abrasion/lesion on the back, back of his nose and also a lesion on his tongue base. What the crap?! We have no idea how this happened. They cauterized the lesions, back to the PICU we go, hoping things will improve. Started Colby's feedings back and also his cough treatments (IPV and cough assist, just like home). BAD idea. As soon as the cough treatment was done, the bleeding started back. And I'm not talking about a "tinge" of red running through the suction tube. It was bright red blood, active blood, filling up the entire tubing, as it has been over the last 24 hours. Of course it's mixed with secretions, but even a little blood is enough to scare the beJesus out of you. Had to pack Colby again. Hold feeds again. We're going to have to get another shirt for Colby that reads, "ok, how everyone has been in my airway" because that's what it seems like. Second day of school! Can you believe this shit?! It's like a really, really bad dream and I wish to wake up now, please and thank you.

Here's where we stand now. All of Colby's blood work indicates he has no clotting disorders. That's good. We think we have the source of the bleeding figured out. That's good. Yesterday his chest x-ray looked "hazy" on the left side, but today's x-ray looks better. That's good. Now if we can just get the bleeding to stop because bleeding is bad! Very bad. We can't do his respiratory treatments, as they agitate the area, which starts the bleeding again. This is what is freaking me out the most. My SMA Type I child lying there and we CAN'T do his normal respiratory routine.

All of this came out of the blue. I'm completely shocked, pissed, frustrated. Colby acts like he doesn't feel well. Of course he doesn't feel well. You know how gross it is to taste blood. He hasn't been able to eat. Plus his ding-dong mama forgot to bring his glasses, so he can't see worth a crap. Way to go, Amy.

That's the latest. As soon as I have more info, I'll update. THANK YOU to those who have offered to help in any way. I know Colby has so many people who love and pray for him, and me too. Also, THANK YOU to Colby's nurse and Tami for coming up here with us. I know we got him here faster than if we tried to arrange for an ambulance. Just so ready for this nightmare to end. 

LOOK HOW BIG HE'S GETTING!

Here he is, my big 5th grader. I'm, like, the happiest, proudest mama on the planet right now. Colby had a great first day back to school today. The only bump we had was the bus was 15 minutes late picking him up from school in the afternoon. Other than that, it all went well. Colby has the same teacher as last year. The same one-on-one nurse also. Same schedule, Monday thru Thursday, 9:15 to 1:45. Different bus driver.

I'm tired, going to bed. Colby has school tomorrow and I have to work. Just wanted to let everyone know Colby's first day of 5th grade was smooooooth sailing, just like I wished. Yay!

Nitey-nite.

YOU MIGHT BE A REDNECK IF...

You find yourself on a Saturday morning pushing your son out of the mud, in his wheelchair! His power wheelchair at that, which weighs oh I don’t know, over 300 pounds, plus his big 70 pound butt sitting in the chair. Can you say big giant clusterfuck?! Colby was in the parking lot practicing driving. He kept going over by the grass. I'd turn him around, he'd go over by the grass. I'd turn him around, he'd go over by the grass. You get the picture. Then I finally thought, oh what could it hurt. BAD thought. I forgot how much it had rained and sure enough, he got stuck, as in wheels spinning, wheelchair not moving. I couldn't believe it. So what else could I do but push him out? Then of course I couldn't bring the wheelchair inside because it had mud caked all in the tires and little tire grooves. So I rolled Colby's bath chair outside. Loaded him onto the bath chair. Brought him inside. Then when Dad came to visit, he sat with Colby while I went outside and washed all the freakin' mud off the tires. Yep, that's my little redneck boy, loving that mud already, lol.

Actually Colby's driving skills have improved lately, for the most part. You can see how he is intentionally working the stop/go and the turn/stop switches. Then there are days when he intentionally tries to run into the van. He got put into timeout last week for doing it. I told him, and told him, and told him, STOP trying to run into the van. He would get so close I'd have to hit the attendant switch and turn him around. I finally said, okay kid, do it one more time and we're going inside. Sure enough, there he went, straight for the van. So I drove his butt inside and made him sit in the living room in the quiet. No TV, no radio, no nothing, for probably no more than 5 minutes. I keep telling him that if I thought he was dumb I wouldn't even bother, but that I know he is smart. But today he did a nice job. That kid knows exactly how to push my buttons.

He's doing great with eye gaze, too, if and when he wants to do something. He loves to go to the holiday page and he'll pick over and over "leprechaun" and "jack-o-lantern". What the hell?! Leprechaun. Leprechaun. If I had a dollar for every time I've heard that word I could buy 15 new vans. I know he does it just to irritate the piss out of me, and it works! Amber, his rock star speech therapist, was working with him the other day. He was doing some amazing stuff on the eye gaze. He was navigating through pages, doing things he has watched us do, but we've never taught him. It really was something to see. Lately he has been using a 45 layout, there are 45 squares, or choices, on each screen. Amber tried a 60 layout, which of course had smaller pics because there were more on the screen. Colby did awesome. He was able to target them and make the same choices as he did on the 45. If he's in the mood, he can really work that thing. But most of the time, I think he sees it as a big toy and a way to "leprechaun" his mama into a frenzy.

Tomorrow is the first day of school for Colby and I am a complete nervous wreck. I've double checked, triple checked everything. Everything that runs off a charge is charging. I called transportation last week to verify they know Colby's schedule. Went to his school today and dropped off some things he'll need. Made sure Apria delivered his oxygen concentrator to school, because let's face it, I've lost all faith in them to do anything right. But surprise, it was sitting in the nurse's office waiting. Colby got a haircut Friday. He got a bath tonight. Now we'll go to bed early and get geared up for another school year. This one has to be better than last year's. It just had to be! All I can keep thinking is how he only got to school 2 days last August before getting sick. Two stinkin' days! Then he spent 39 days in the PICU. That hospital stay was horrible. One of the worst. Stuff like that just can't happen any more. I mean I guess it can, but I'm hoping and praying really hard it doesn't. This trach just has to help Colby with his endurance, respiratory stability, secretions, etc. No use worrying I suppose. It's gonna be what it's gonna be. Which is fabulous, right?!

Okay, off to brush Colby's teeth and get him in bed early. Big day tomorrow.  

THESE ARE THE DAYS OF OUR LIVES

I've always wanted to say that! The last few days for Colby and me have been some good, some bad. This past Saturday, Dad and I took Colby to the Henryville parade. I loved it, and when I asked Colby yes/no if he liked it, he looked straight at my yes hand. Good boy. Believe it or not, that was Colby's first real outing all summer. We didn't get home from the hospital until the end of June. There's no way Colby can get outside when it's as hot, humid and miserable as it had been in July. The weather for the parade was perfect. Very sunny though, and I had a hat on Colby and totally greased him down with sunscreen. For me, the highlight of the parade was seeing a big green tractor being driven by a big yellow rooster. Now that's entertainment! Then we stopped at the Moose, had lunch and walked around the car show. As soon as we got there, Colby had a choking episode. That's always a blast to deal with, but we handled it and went right back out to looking at the cars. Even though that happened, it was a wonderful day, and I'm so glad we took Colby up to H-ville. It was great just to get him out of this apartment.  

Sunday was our lazy day, and I do mean we were lazy. I did laundry and other than that, we hardly moved from the couch. Monday was TCM, yep, another trach change. I wasn't even nervous this time. It's been a hard week for me in that I've been arguing with various individuals. Believe me, I really don't want to fight. I have many other ways I could spend my time and energy. Got into it with the ex. I guess that's going to happen from time to time. As the saying goes, there's a reason (or many in this case) why he's the ex. Tuesday went out to dinner with my BFF Joni. She was good, had diet Coke and a salad. Me, not so much. Applebee's shrimp fettuccine and white peach sangria, can you say super-duper yummy! Went to Kroger to pick up 3 things for Colby, 1 refill prescription, 1 new prescription, sterile water to clean his trach. Walked out with none of the above. They tried to say insurance said Colby's Zyrtec wasn't to be refilled until September some time. That's total bullshit, it's due now. I wasn't in the mood, so I just bought it over the counter. Colby's pulmonologist put in a prescription for Robinol. Don't know if I want to use it on Colby or not, which is good because the pharmacy says now it has to be approved by insurance. Also, I had asked the pharmacy to order some sterile water. I want to use it to clean Colby's trachs. Yes, I know you don't have to have sterile water, just wanted to try it. So yes they ordered it, and yes, it was there. But could I get it, no, because you need a prescription. Are you flippin kidding me?! A prescription, for WATER?! Good times at Kroger, gooooood times.  

The Apria drama continues. I thought we were moving in a forward direction, but it's the old 1 step forward, 17 steps back scenario. You don't even want to know the things I said to the customer service rep and the manager when I called to check the status of Colby's latest order. Poof, they had no record of Colby's order. Like it vanished into thin air. Oh hell no I'm not putting up with this crap. So in the future, I'll be e-mailing Colby's supply order to a specific person who is in charge of his account. That way I'll have a better paper trail. You just have no idea how freakin' pissed I was after that mess yesterday. The day started out great. Worked at the hospital. Had no screw-ups, didn't break any machines. Then I had to deal with the Apria clusterfuck. Will it ever end?

I'd better get going. I'm sure my artichokes are done draining by now. Wine Night is here tomorrow night and I want to get a head start on snack making.

GETTING SO MUCH DONE I EVEN AMAZE MYSELF HAHA

MONDAY - Busy but good. Made phone calls and got on the internet to order a buttload of supplies for Colby. Made some zucchini bread and muffins. Colby's nurse and I gave him a bath. Colby had PT at 3:15, so our nurse and I were busting our buttons to get him ready so he could go outside and ambush his therapist with his super soaker squirt gun. We gave him his cough treatment early, hurried up and got his back brace on and put him up in his power chair. Got him in the living room and was getting his squirt gun together, and in walks his physical therapist. She was 20 minutes early! Bummer dude! But we went outside anyway and let Colby squirt us. He loved it. He also drove around the parking lot and did a great job. He was avoiding parked vehicles, turning away from them, paying attention. The physical therapist only had to intervene once, impressive.

TUESDAY - Day from hell at Cincy Children's. Took Colby to Hanger Prosthetics, for the 3rd time, to pick up his hand splints. And guess what?! They STILL didn't order him the correct ones. I told that dude I was going to pick up that splint and beat him over the head with it. He started laughing and looked at me, I wasn't laughing. Guess he thought I was kidding. So they're going to order them a 4th time. Once we get this mess straightened out, they'll never see our faces again, that's for sure. Then took Colby to Cincinnati Children's Hospital for appointments. First, spine x-rays. They wanted to take the x-ray of Colby sitting up, without his back brace on. Really? Seriously? That was interesting. Then went to pulmonary. His appointment was at 2:30, dr. came in to see Colby at 3:15. The appointment went fine, but that put us behind for Colby's 4:00 appointment in endocrinology, a new doctor. Usually I take our itinerary with us, but I didn't this time. So I asked the friendly nurse sitting at the pulmonary desk, where is endocrinology, please? She sends us to Location A. Well guess what, endocrinology is on E, the complete opposite end of the hospital. That made us even later getting to his appointment. Colby will definitely start infusions to help improve his low bone density. However, the endo dr. wants to wait and see when Colby is having spine surgery and what kind of surgery he's having before starting the injection treatment. We talk to the spine doctor next month, so endo is on hold for a while. Didn't get home until 8:30 Tuesday night.

WEDNESDAY -  Colby rested, I didn't. I worked at the hospital, my only day to work this week. Since we had such a wild day the day before, I just let Colby be lazy. Then Colby had a nurse from 4:00 to 10:00, so Mama went out! Had dinner at a local little dive bar with a couple of my gal pals. Dang good food though. French fries tossed it truffle oil, they were to die for! I was fantasizing about them at lunch today. Home at 9:30 and was completely worn out. In bed by 11:00.

TODAY - Getting stuff done. Got our application for Center for Courageous Kids camp ready to fax. It was due on Monday, whoops! Totally forgot. And of course it has to be signed by a doctor, so that's extra time and effort. Going to fax it tomorrow first thing. While the nurse got Colby up and going, I ran around the apartment like a goober trying to straighten up around here. Just gave it a lick and promise, but that's better than nothing. Great, fantastic, wonderful, super-duper news, Colby's IPV machine was delivered today, giddy up. Sooooo thankful we finally have it for Colby. Some time next week I'll mail the one we borrowed back to Vermont. (Thanks again O'Neills). Got to visit with a very dear SMA mommy friend I hadn't seen literally in years, and she brought her 2-month-old baby. What a cutie he is. Small world, the shelving company that I called to get a quote from happens to be owned by my SMA mommy friend's dad. Had no idea when I called and in talking to him, we put it all together. So she came out to do the measurements, and I loved seeing her. A volunteer from Hospice came out and gave Colby a massage. He loved it, but hey, who wouldn't. We'll definitely have her come over again.

There you have it, our week so far. I have a splitting headache, so I'm going to take some ibuprofen and go to bed. 

BUSY, THEN LAZY, WILL BE BUSY AGAIN SOON

The last few days have been great around here. I wasn't able to order Colby's supplies from Apria. I looked back and noticed it wasn't quite time to order his trachs, so ordering supplies is on the to do list for tomorrow. Also going to order Colby's supplements and other items we pay for out of pocket. I think that'll be the easiest way to handle all these supplies. Take the time to do 1 or 2 big orders a month. As if you hadn't noticed, I'll hell bent and determined to organize, de-clutter, streamline and make things easier around here!

Thursday we got Colby outside and he finally got to use his new squirt gun. We hid behind the van, then when my dad came over Colby ambushed him. It was priceless! Dad was a great sport, of course, and played it up. I could tell Colby loved it. He was squeezing that switch with all his might, really cute. Thursday night we had a nurse back for the 2nd time. When they're here the 1st time, I train them and show them how things need to be done around here. This time I let her do Colby's care. She'll be back again one day this week. Don't know if I'm ready to go far and let her stay alone with Colby just yet. Maybe that'll be my go Krogering night (it's 1/2 a mile down the road) and we'll see how she does.

Friday was busy, busy. I went and worked at the hospital for a couple of hours, just to help get things caught up for the weekend. Came home and the nurse and I gave Colby a bath. Then a couple of my BFFs came over and worked diligently on Colby's room. I've decided to bite the bullet and spend the money on a shelving/cabinet system. It'll be worth it. They can bring in all the supplies, do all the labor and bing, bang, boom, it'll be done and be done correctly. We had that bedroom torn apart for 3 hours, moving stuff around, seeing where the hospital bed should go, etc. We were measuring, drawing, figuring out what furniture stays, what will go. Then we had to move everything back for now, it was crazy! But I have a clear idea of what I'm looking for, and the shelving company is coming out this week to take measurements, give a quote, etc.

Yesterday I was determined to have a lazy day, and that's exactly what we did. Did our normal stuff: sat Colby up in his power chair. He used his eye gaze. He took a couple windows off his vent. Played with that goofy crab haha. I did a load of laundry and watched a movie. I did manage to bathe but other than that, I didn’t do much else. Just wanted a day to hang with my boy. It was so much fun we decided to do it again today! Same thing pretty much, only I took Colby outside. Just for a few minutes, though, because it's still so stinkin' hot and humid outside. Let him drive his chair for a bit. It's so frustrating. Over time I see Colby's left hand/fingers getting weaker and weaker. We've tried about every time of switch with him so he can drive or turn with his left hand, but man, it just isn't working out these days. I think our last option is fiber optics. We're looking at that for his new wheelchair maybe.

That's all I know. Colby's night nurse is in the kitchen doing something, making feeding packets I think. Guess I'm off to bed.

TELL US WHAT YOU REALLY THINK, KID

"I feel bored." This is what Colby told his speech therapist today, not once but twice, while they were working on eye gaze. He's nothing if not honest I suppose! Finally got his super soaker squirt gun hooked up to the battery interrupter and working. Since he doesn't have the strength to pull the toy's trigger, we put in an interrupter. It's a tiny disk that you place over the battery of a toy, appliance, radio, anything that uses batteries. Then you hook the interrupter into a switch and this allows Colby to use the toy. Make sense? Can't wait to take him outside so he can squirt somebody (besides me preferably).

I worked at the hospital today. That'll be it for packing pills until next Wednesday. Very quiet day, didn't break anything.

That's all I got. Not much going on around here at the moment. Colby's nurse is in the kitchen making packets for his feedings. I've got a lot of work to do in the next couple of days, de-cluttering is top priority. It never ends when you live in a small space, that's for sure. Seems like every time I get rid of 1 box/pile of crap, 3 more are waiting. Going to sit down tomorrow and put in a huge order with Apria, which will be even more boxes to go through, organize. I've made a spreadsheet in the hopes that will help me keep better track of what Colby has, needs, when to order it, how many insurance allows monthly, etc. Yes, Colby has that many supplies and equipment.

Starting to work on reorganizing and redecorating Colby's room. I've got my ace team brain trust (Amy, Kim, Joni) coming over Friday night so we can measure and figure out the best way to get storage and floor space out of Colby's room. Okay, there may also be Pizza King and cold beer involved, but we'll get some work done, too. At least that's the plan at the moment. Then once we figure out what will work best, may have to buy some new supplies and furniture for Colby's room. Then I'll get another group of suckers, I mean volunteers, to come in and help with the cleaning, rearranging, etc.  

August is SMA Awareness Month. Throughout the month I'll share some facts and my thoughts on Spinal Muscular Atrophy. I don't really have any deep thoughts about it at the moment. It sucks. It's unfair. No child deserves it. I hate it. I'll always hate it. Yeah, pretty much sums up my thoughts about it for now.

Getting ready to watch the American male hottie swimmers in the Olympics, then off to bed.