COLBY UPDATE AND FUNDRAISING UPDATE - Don't forget you need a new spatula or cookie sheet!

It's been a while since I've blogged, I know. I don't like going over a week without blogging, and you know exactly what I'm going to say. We've been busy, really busy. Hey, it's true, really true. So let's get caught up on all things Amy and Colby, shall we?

Starting with Colby, of course. He's doing great! Last week we had appts at Cincinnati Children's. These were on the calendar months before he got sick recently. Went up on Tuesday. First we saw Pulmonary. They tested the pressures and leak in Colby's trach, putting various amounts of water in his cuff. Turns out he was losing a lot of pressure, meaning he wasn't getting the total benefit of his vent settings. The compromise is, we put as much water in the cuff that still allows Colby to verbalize, 2 mL seems to do nicely. The pulmonologist thought Colby looked great. He said hey, if you want to send him back to school, okay by me. Then off to Neurology. We saw the dietitian. She thinks Colby needs more protein in his diet. I just did a major dietary overhaul to Colby's formula recipe back in May. So I don't know if I agree with her or not. As soon as I have some time, I'll sit down and reevaluate. The neurologist thought Colby looked great, too. Dad, Colby and I spent the night up there because Colby then had an ophthalmology appt on Wed morning. His eyes are fine, his prescription remains unchanged. Love getting those good reports. They make the long, tiring, worrisome trip much easier to handle. We were all simply exhausted by the time we got home Wednesday afternoon, 3:00ish. Took a whole day to unpack, reorganized and rested. Next week we go see the spine surgeon for a post-surgery follow up. That'll be a much easier trip, up and back in one day. And I know we'll get a good report then, too, because let's face it, my sweet boy is a rock star stud!

Yesterday was Colby's first day back to school since mid-September. Yikes! He seemed fine and excited to get back to school. I was a nervous wreck. And in typical kickass Colby fashion, he did great. I stayed home and cleaned house while he was gone, along with the help of my sweet, wonderful mama. This place was super gross dirty. Hadn't been cleaned really well since we both got sick. Can you say nasty?! But it' sparkly clean now. So nice to get one chore completely done and off the to-do list. I've changed Colby's school schedule. He'll be going on Mon, Wed, Thurs and Fri now. Tuesdays we're playing hooky from school so we can take Colby swimming. It was just too much trying to get it all coordinated with him going to school on Tuesdays. Hey, don't judge me. Just trying to figure out what's best for all parties involved. And in my humble opinion, which after all is the opinion that matters, we're all better off if Colby doesn't go to school on Tuesdays. End of story.

Let's talk fundraising! THANK YOU to all who attended the Pampered Chef cooking show last week. I was unable to go, but hear it went great. There were about 10 people in attendance and the sales are rolling in. If you haven't placed your order yet, THERE'S STILL TIME! Orders need to be in by the end of the day Thursday, October 30. Here is the link to order online: http://tinyurl.com/ColbyRussSMA. Colby and I will receive 25% of the sales from this fundraiser. That's a significant amount of change for our “get-out-of-this-tiny-apartment-and-into-a-house” fund. The Pampered Chef special for October is 20% off all stoneware and metal bake ware. That's a heck of a sale! Ask anyone, they'll tell you, Pampered Chef stones and bake ware are fabulous and really are must-haves for your cooking needs. Everyone should have some Pampered Chef in their kitchen - it's wonderful, quality stuff. Just sayin'.

Better get going. Want to get my shower before the nurse gets here at 8:00. I have a hair cut appt today. Then we'll take Colby swimming. Then Colby will need a bath to get the salt water off. School pictures are tomorrow, and at this point, I have no idea what he's wearing. Might also trim up his hair a little. It's looking a little ratty. And oh yeah, I'm going in to work a few hours tonight. We're super busy at the hospital. Imagine that, a hospital really busy during cold and flu season?! Okay, there's your update for now. Must get busy with our Tuesday. More soon, it won't be a week before I blog again, I promise.

FUNDRAISER INFO - Who needs a skillet??

Our Next Get-a-House Fundraiser

PAMPERED CHEF

Profits from this fundraiser will benefit our "we-have-outgrown-our-tiny-apartment-and need-a-handicap-accessible-home" fund. In case you are reading this blog for the first time, here is our story:

Colby was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 at four months of age. Although he had a life expectancy of 2 years, Colby just celebrated his 12^th birthday in July. He is trach/vent dependent and g-tube dependent, along with requiring a wheelchair for mobility. Colby requires various braces and supports to help with contractures and assist in positioning. He is nonverbal but currently uses a communication system with eye gaze technology. He is followed by a pulmonologist, neurologist, cardiologist, orthopedist, dietician and physical therapist at Cincinnati Children’s Hospital. Colby had spinal fusion surgery in June, requiring a 16-day hospital stay. Colby also had a recent respiratory illness and spent 11 days at Cincinnati Children's.

Colby's mom, Amy, is a single parent. She works part time so she can be available for Colby’s hands-on care and appointments.

This fundraiser is designated to assist in the purchase of a house that can be made accessible for Colby.  Profits will be 25% of all purchases. Also for every cooking show booked – an additional $5.00 will be added to the proceeds.

OCTOBER PAMPERED CHEF SPECIAL:

ALL STONEWARE AND METAL BAKEWARE 20% OFF

Your family and friends may shop online at:  http://tinyurl.com/ColbyRussSMA

All deliveries in the local Kentuckiana area will be provided. If you wish to purchase and live outside the area, please select direct shipping and your order will be sent directly to you. This will allow everyone to share this fundraiser with all family and friends.

If you would prefer – you may contact Candy Fox, Consultant with Pampered Chef, at 502-445-0027 to place your order via phone. Her e-mail is xofden@aol.com if you want to send her your order that way or have any specific Pampered Chef questions. Payment methods include Visa, Mastercard, Discover and American Express. Make checks payable to Candy Fox. 

All orders are due by October 31, 2014

From Amy:

*I would like to thank everyone who has supported us and our fundraisers in the past. Our recent Origami Owl fundraiser profited around $250 for our house fund. Slowly but surely, we will reach our goal!

**I would also like to give a special shout out thanks to my friends at my old job for organizing this Pampered Chef fundraiser. I haven't had to do much for it except spread the word. Thanks GCCS gang. Love ya bunches.

MUCH NEEDED REST AND NORMALCY

It's been 8 days since we've been home from the hospital, and I feel we've finally gotten around to our "normal" routine. Saturday night was the last night I had to get up and do a respiratory treatment at 2AM. Colby is also finished with his antibiotics. And I must brag a bit and say, Colby is doing very well. So nice to hear the whoosh-whoosh-whoosh of clear lungs instead of the crackles and rubs we heard for over two weeks. Again, let me just say how incredibly happy we are to be out of that hospital and back home. I appreciate all that Cincinnati Children's did for Colby. The nurses and respiratory therapists were all, for the most part, pretty darn good. I didn't have to throw any big fits to get something fixed. But I'm so glad to be out of that hospital, you have no idea. I'm sure Colby is too. After all, he was the one with the illness.

There are two things I've noticed with Colby's new vent mode and settings. #1-his heart rate is lower. Much lower than it used to be. I guess that's a good thing? His heart isn't having to work as hard and he's more comfortable. #2-Colby can't jabber and make noises like he could before. He still jabbers but it's not nearly as loud. Almost sounds like he has a sore throat. I hate this. Absolutely hate it. I want to run back there and put the vent setting back where they were. But that's not the answer, so we'll all have to get used to his new, not-so-loud, hoarse jabbers. Good God, SMA sucks so much there are no words to describe it.  

Monday the nurse and I took Colby to look for Halloween costumes. If you know us at all, we take our dressing up for Halloween pretty darn seriously. So we have Colby's picked out. And no, I'm not telling, it's a surprise. Now I have to decide if I'm going to dress up or not. I've been invited to two Halloween parties, on different weekends, and guess what? No nursing coverage for either night. That blows. But I could dress up and go to school with Colby the day they have trick-or-treating. That's what I did last year, just tagged along with Colby and his nurse. Can't decide yet.

Monday night I hit a wall. The "I've been stressed, worried, and have missed way too much sleep" wall. It was 9:30PM and I honestly couldn't function. I was so, so, so, so tired. I told the nurse, I have to get some sleep. She said no problem, she would finish tucking in Colby. I swear I got ready for bed and was zonked completely out by 9:45. Slept until Colby's feeding pump went off at 7AM the next morning. Man, did I ever need that sleep.

Tuesday we took Colby swimming for the first time since I don't know when. He loved it. He looked happy and content floating around in the water. Taking him swimming is a big pain in the patootey, but very worth it. Then when the night nurse got here we gave him a bath to get all the salt water off of him. Tuesday it was his night to zonk out. By the time I walked the nurse to the door, chatted with her a couple of minutes, and went back in to tuck in Colby, he was already snoozing away. Play hard, sleep hard, guess that's our motto.

I have struggled back and forth and back and forth on whether or not to send Colby back to school or put him on home/hospital instruction for a while. I know when we were at Cincy I said home/hospital all the way. But of course I'm going to think that when he's in the middle of an illness! I was freaking out just a tad. This has been a very difficult decision. Finally, I asked Colby, do you want to go back to school, yes or no, holding out my hands like always so he can use his eyes and answer. He picked YES! I was shocked! So shocked I asked him 3 times, and each time his answer was yes. The nurse said, how many times are you going to ask Colby that? My answer was, as many times as it takes until I get the answer I want, haha. But I asked him again this morning, and he definitely said YES to going back to school. So, Mr. ColbyRuss BigBoyPants is returning to school Monday, October 27. Final answer. I think.Unless I freak out and change my mind between now and then.

This blog entry is getting lengthy so I'll wrap it up for now. Next blog entry will be to tell you all about the Pampered Chef fundraiser we're having to fatten up that "get Amy and Colby a house and out of their tiny apartment" fund. Bye for now. Realize your blessings. Count them. Be thankful for them. Should make you smile, and smiling is gooooood.

DID I MENTION WE'RE SO VERY GLAD TO BE HOME?!?!

Good morning world and all who inhabit it! Yes, that is in fact, a Spongebob quote. But hey, if the shoe fits. We are continuing to slooooooowly get back to normal around here. Colby is staying on his extra medications - Xopenex inhalant, hypertonic saline, Tobramycin inhalant and Bactrim through Sunday. We're still doing respiratory treatments every 4 hours during the day and every 6 hours through the night (so we can get some freakin' rest). Then maybe, just maybe, on Monday we can do our normal routine around here. We've been building up an arsenal of medications to use in case either of us starts to get sick again. The pulmonologist prescribed 2 doses of Tamiflu. I'm also going to start taking Emergen-C. We have Colby's leftover Cipro drops should we need them. We'll also have leftover doses of the hypertonic saline and Tobramycin inhalant should Colby start to show "sicky" symptoms. But that's not going to happen, right? Neither of us is getting sick again this fall/winter, right? Great googly moogly, I certainly hope not. It's just been downright shitty around here since mid-September. But we're both better now and ready to get on with whatever it is we need to get on with.  

A good indicator of how Colby is feeling is his ability to sit up in his wheelchair. Yesterday was the first time since September 26 that Colby sat up. I would have been pleased with 20 minutes or so. But Colby, being the rock star stud that he is, sat up for 52 minutes, no problem! Then his heart rate started to get a little wonky, so we laid him back down. Yep, Colby is definitely on the mend.

I have spent my days playing catch-up around here. Thursday I made around a dozen phone calls. No exaggeration. Still have three to make on Monday. Been trying to get caught up on some sleep. Yesterday I actually got a 45-minute nap while the day nurse was here. I zonked out! My bedroom is right across from the kitchen, so I had set the stove timer for 45 minutes. It went off and I was sleeping right through it. The nurse had to knock on my door and say, uh Amy, your stove is beeping.  Went through all the mail last night. With the help of the Hosparus nurse, got Colby's home/hospital papers going. Today I'm going to work on a grocery list. A good, COMPLETE grocery list where I won't be running down to Kroger every day because I forgot this or that.

Colby's nurse will be here at noon, and we're giving Mr. ColbyRuss HippiePants a much-needed hair cut and bath. He's about two weeks overdue for a cut, and his hair is looking nasty! I also need to run to the mall and pick up a couple b-day presents. Maybe try and sit Colby up again. Depends on how much time we have. Hoping for the same or better than yesterday. Also need to have a very serious discussion with Colby about Halloween costumes! We've been looking online for the last couple of weeks, but it's time to finalize the decision. What will it be this year? Frankenstein? Teenage mutant ninja turtle? Skeleton? Don't know. If he feels like it on Monday, the nurse and I may just have to run him out to Party City so we can get some ideas. As you know, we take our Halloweening very seriously around here.

Bye for now. Need to make my bed, unpack the dishwasher and make Colby's food for the day. Oh yeah, I probably ought to bathe today also. By then the nurse will be here and we'll get started on Colby's hair cut and bath. Love getting this stuff caught up and done! More soon, from my own computer in my own home, as I watch CMT on my own TV. What a wonderful thing that is, being HOME, even if it is this dumpy old apartment. Beats hanging out in that hospital room on the TCC any day, for sure!

WE ARE HOME!!!

And that's about all I have time to blog right now! We did rounds at Cincy Children's at 9:30. The team agreed he could be discharged. Somehow we were able to get an ambulance today. Usually that takes 24 hours to arrange. The discharge nurse said yep, they'll be here at noon! We started scrambling around like crazy. You'd think 2.5 hours is enough time to get us packed up and ready, but you'd be surprised at how much packing, organizing, arranging, etc there is. And breakfast, I had to have some food, dangit.

The ambulance was absolutely on time, but it took us about 45 minutes to finally get on the road. Hit a little construction on the way home, but nothing horrible. Never completely stopped traffic, thank goodness, because that makes me cray-cray. Got Colby home and into his bed about 3:00. Since then, as you can imagine, it's been crazy. Colby needed his feeding. Colby needed to be changed. Colby needed his next round of respiratory treatments. The nurse supervisor came over at 3:15 to do Colby's resumption of care. So now we can have nursing start back with us. The nurse we usually have on Wednesdays is able to work tonight. She'll be here at 6:00. When she gets here, I'll run down to Kroger and get the 4 prescriptions Colby needs to continue to completely get over this illness!

Right now I don't know whether to scratch my watch or wind my butt. Lots to do. I think it's safe to say I'm on the frazzled/practically exhausted side of life. But so thankful to be home, I could poop rainbows. Ready to get back to our "normal" lives, whatever that may mean. I have a wonderful friend bringing over white chili and cornbread for supper. Love her! One less thing I have to worry about.

Will blog again soon. Just let me get some things caught up around here. I have had time to listen to the 14 voice mail messages I had on my home phone since we've been gone. They were all Colby related, of course. Imagine that. Again, I know there were/are many, many people who care about us and were praying so hard for Colby to get better. I truly believe in the power of prayer. And the power of bronchoscopies, I believe in that also, haha.

HE BE BRONCHED

In talking to my mom last night, we saw no hurry in getting up this morning. Colby's bronchoscopy was scheduled as an add-on and was scheduled today for "some time between 7AM and 11AM." So we figured well, it'll be later in the morning. WRONG! Nurse flies in the room right before 7:00 and says Transport is on their way up to get Colby for his procedure. It's on! Holy crap on a cracker. Very well then. I jumped up and barely had time to brush teeth, take med, put in contacts and sling on brazeer. Then off to the OR we went. Mom stayed behind in the room. Brochs are simple procedures, don't take very long, and Colby has had several in his lifetime. The whole procedure was done by 9:00. The pulmonologist doing the bronch said yep, he definitely needed it. She showed me the pictures she took while down his airways. Mucous/snot everywhere! He did need it for sure. So hopefully she has washed off/suctioned out enough secretions that NOW, FINALLY, air can get moving through Colby's left lung. That will in turn make his respiratory treatments effective and we will get that lung re-inflated. They scheduled an x-ray for 11:30 this morning, and I'm very anxious to see the results from that. If there isn't some improvement at least, I'm afraid I'm going to have to have a small meltdown. Or perhaps a very large one, haven't decided. This kid has to start getting better. It's time.

That's been our morning. Super duper exciting! I'm going to head back up to the room. Check on Colby. Get my shower. Today I'm absolutely taking a nap. Didn't get one yesterday and I'm feeling it already today. Mom is here with us now, and I know she'll watch Colby very closely while I snooze.

I'll update later and let you know how Colby's day has progressed. Bye for now.

MONDAYS SUCK, THIS MONDAY IN PARTICULAR

Wow. Just wow. Today has turned out to be a real WTF kind of day, that's for sure. Colby was supposed to have a 6AM x-ray, or at least an early morning one. Someone, again, forgot to put it in as a portable x-ray, meaning they come to Colby's room and do it while he remains in his bed. That had to be worked out. The nurse was really busy this morning, so I did all of Colby's morning care. No problem. I'm used to that by now. In rounds we planned on going home tomorrow. At least that was the plan originally. So then I'm talking to my mom on the phone and dad is here with us. Basically I told Mom she should just stay home. Why come up here for less than 24 hours, right? But we had to make some arrangements because Colby needed his feeding supplies from home and I needed a prescription, both of which Mom was bringing up today. Got that worked out. Dad left to meet someone halfway to get that stuff. Oh wait, first he had to go down to the Concierge Department early today and get me a couple of things. They help you run errands, get things you need while you're here and can't leave your kid, etc. This service is a Godsend! They put your credit card number on file and charge you for the things they get for you. My phone charger bit the bullet last night. I knew it was only a matter of time, and of course it happens while we're here. Also needed stamps because I have bills to get paid, like 3 days ago. Poor Daddy, he has run around everywhere for us today. Oh wait! But it gets better.

The x-ray at 11:30ish did NOT look good. Colby's left lung is still partly deflated. Too deflated to take him home, that's for sure. We've been at this since Friday I think (my days are running together now) with no true success. We sure thought we had it licked. In rounds this morning, we were planning for discharge for tomorrow. After the x-ray, discharge cancelled. This is turning into such a crock of bullshit. So the NEW PLAN for tomorrow is to do a bronchoscopy. We're on the add-on list, which makes me nervous. Been there, done that and basically we're at the bottom of the totem pole. It's supposed to happen sometime between 7AM and 11AM. Don't know what else to do at this point. We've tried around the clock respiratory treatments, every 4 hours for days now. Also tried hypertonic saline, positioning, increased pressures on Colby's vent. So bronchoscopy is next.

I could lose it. I want to grab someone, anyone, shake and possibly throat punch them and say FIX MY KID!! You're the experts! You're one of the best hospitals in the country. FIX MY KID, AND FIX HIM NOW!! We've had wonderful nurses, doctors and respiratory therapists, but enough is enough. I want my son better. That's it. That's all I want. For my sweet boy to get better and we get home.

I decided today once we do get home, Colby is on lockdown. I'm not taking the chance of putting him, my parents, or me through this shit again. No more school for Colby until spring. Home hospital instruction it is. I'll work very hard to make sure Colby doesn't just lie in bed. I can get history books from the library. We can do lots of things on his eye gaze. He can have visits from the high school students a couple days a week like he had been doing. I'm sure if I try, I can find many ways to keep Colby entertained.

If nothing else, today has gone by very quickly. The first time I looked up it was 2PM. How time flies when your day becomes a complete clusterfuck. Time to head back upstairs and see if kid has had his 5PM feeding. I'll blog after the bronch tomorrow and let everyone know the latest. Bye for now.