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.

MAMA NEEDS A NAP, AND FOR THE COLTS TO WIN

Continued improvement. That's the way, uh-huh uh-huh, we like it, uh-huh uh-huh. Talked to the attending doctor today. Do we have a big master plan? Not really, but here's what we're going to do today. Tweek Colby's vent settings some. Try to bring them down from when we put them up to get Colby's lung re-expanded. Take a chest x-ray in the morning. Hopefully that lung is re-inflated. Then we can start talking discharge and HOME. I swear I'm not telling anyone when we're going home this time. Last time it was such a bummer having to come back and say, nope, new plan, NOT getting discharged as we thought. Nah, I probably won't really do that. Because once we start planning for discharge I get really, really excited and it's hard to contain myself. Colby is as sweet and adorable as always. Jabbering away. Melting everyone with those beautiful brown eyes. How lucky am I to be that boy's mama?! Just want to get us back to the Ville where we belong.

Our respiratory therapist (RT) walked in last night and I thought, oh holy shit, you have GOT to be kidding me. You remember last hospital stay, I got into it with an RT? Colby was struggling and I didn't think she was moving fast or doing enough? Then I said we need to change his trach, immediately. And she said okay, but I have to call the attending. I about flipped my lid. I said you call whoever you want, I'm changing out Colby's trach NOW, get out of my way. Well, our RT last night was her. But you know what, everything was fine. I was watching her like a hawk, and she knew it. She did a very good job with Colby's treatment. We even worked together to do Colby's trach care last night. See, I can play well with others, sometimes, if absolutely necessary.   

Who has two thumbs, is tired and grumpy, and needs an attitude adjustment? This gal right here! Everyone and everything is on my nerves today. REALLY on my nerves. I know that's the wrong attitude to have. Colby is exactly where he needs to be, and the people around me are just trying to help take the best care of him possible. But I also can see us getting home soon, and once Colby reaches this "it won't be much longer" time frame, I get antsy. But then again, we had discharge planned and then Mr. Pneumonia collapsed his lung! So I need to calm myself down. Tell myself things are getting better and things really could be so much worse. To kill time yesterday, I went through the text messages on my phone. Deleted over 100 old, unnecessary texts. Today I'm going to watch football - Go Colts!! - and read my book. I started this book when Colby was having his trach surgery over 2 years ago. Probably about time I got it finished. Try not to eat my weight in sweets and comfort food. Already have fresh fruit and yogurt waiting for me for lunch.

Thanks everyone, again, for staying in touch. I really, really mean it. THANK YOU so much for caring and supporting us through this unpredictable, often not-so-fun SMA journey. I'm grateful for all the support and prayers you send us not only when Colby is in the hospital, but every day. Mwwwaaaa, big kisses.

COLBY IS BETTER CAN WE JUST GO HOME NOW, PLEEEEEEEASE??

Colby had a fabulous night and is also having a fabulous morning. I really liked our nurse and respiratory therapist last night. They made sure Colby got his feedings and respiratory treatments on time. I totally understand that not everything Colby needs can be done exactly on time by them. They have other patients. I get it. But they have to understand I run a tight ship, haha, and when Colby needs respiratory treatments every 4 hours, he is to get them every 4 hours on the dot. It's no big deal. If they aren't in here in time to do the treatments, I start them. This morning everyone disappeared on me. No nurse, CNA or parent to be found. No big deal. I did Colby's g-tube care, trach care, changed him, washed his face and brushed his teeth on my own. When I think Colby needs something, he's going to get it, whether I have assistance or not. He got his first feeding at 11:00 and he's due for a respiratory treatment at noon. Just enough time to come down and blog.

I can tell Colby is feeling much better. He is alert, not sleeping as much and jabbering LOUDLY. Very loudly, and that's even with 2 mL of water in his cuff. I told him this morning there was no doubt in my mind he was going to win the Loudest Kid on the Unit award. His oxygen levels are fantastic on room air and his heart rate is staying nice and steady. His blood pressure is up again this morning. Are you kidding me, kiddo? But that's what I expect when Colby is in the hospital. I hope the day brings more improvement and comfort to sweet boy. He needs it and certainly deserves it!

I can also tell the attending doctor and I are going to disagree on when Colby gets discharged. Now, I don't want to rush anything. Last thing I want is to take Colby home before he's ready, then him have a setback and we end up back here. But then again, we're over this place. So over it! What I thought would be an easy 3-4 day stay is now going on day #8. We need to be home. But I think the attending wants to wait and maybe get Colby a sleep study scheduled one day next week. I know he needs one. He hasn't had one in a long time, and obviously Colby's vent settings need some adjusting. He also said something about waiting until Colby's IV antibiotics were done before going home. I was quick to point out that shouldn't keep us here. Colby has a port and can get his antibiotics at home. So we'll need to get another chest x-ray to see how the collapse issue is going. The attending said he hasn't decided whether to get that tomorrow or Monday. Shit, I just want to get my sweet boy home. That's really all I want right now. Oh, and some chocolate cherry Bailey's. Can't lie, I want some of that very badly right now also.  

This weekend is Colby's fall break and we were supposed to be doing some day camping with Grandma and Grandpa Kenny. It kills me we're not getting to do that. I want to go work my job, decorate for Halloween/fall and spend time with my friends. I want Colby back home in his own bed with the nurses he's used to seeing. I debated on whether or not to bring up Colby's eye gaze. I didn't. I already had all his medical equipment, plus our overnight bags to bring with us in the ambulance. With the eye gaze you also have to bring the charge cord and the stand. Too much. So if we're going to be here another 4-5 days (the thought makes me throw up in my mouth a little) do I have Mom bring it up Monday or not? Decisions, decisions.

Trying to figure out what to do with the day so I don't go completely out of my mind cray-cray from boredom. Probably wouldn't kill me to step outside this hospital and go for a little walk. As long as I stay on the hospital campus, of course. This is not exactly the best part of town. Watch some college football I suppose. Read some of the book I brought. Give Colby lots of PT and we can read some of his Harry Potter book. Need to go through all our stuff and get it better organized. Yesterday when we thought we were going to the PICU, we were throwing stuff in bags right and left quite hurriedly, so everything is totally unorganized. Took me about 5 minutes to find my freakin' toothpaste this morning. And who knows, I may even blog again. Happy Saturday everyone. Get out and enjoy it if you can. Sure wish we could.  

THIS CHILD IS DRIVING ME CRAY-CRAY

Seriously, if you were to walk into Colby's hospital room right now, you'd never know the crap we were going through just 8 hours ago. His heart rate is perfectly normal, in the 80's and 90's. His temperature is perfectly normal, 37.0. His blood pressure is not only up, it's high again, like we're used to seeing when Colby is in the hospital. He's jabbering away, awake and alert, like hey y'all what's up. Let me just take a brief moment to shrug my shoulders, roll my eyes, and let out a ginormous sigh of relief. Don't get me wrong, I'm thankful for all of that. I just don't get this kid sometimes. Cannot figure him out. And it terrifies me how quickly he can go from good to bad, from bad to worse, from worse to shitty worse, then poof, from shitty worse to good again. I'm pretty sure when we get home I'm going to need some therapy. Seriously, after dealing with this SMA stuff for all this time, I'm probably well overdue.

So happy to report the update news is all good. The tests that have come back so far (urinalysis, blood gas, blood count) are all normal. Did I say that in my last blog? Sorry if I'm repeating. Running on fumes at this point. Colby is tolerating his feeds just fine, peeing and pooping just fine. And you know how important poop is in the TCC!

The plan from here: continue with respiratory treatments every 4 hours. Trying to get that left lung to pop open the rest of the way. Continue current antibiotics and wait for blood culture results - takes 36-48 hours. Adjust antibiotics if needed. The bronchoscopy has been put on hold for now, thank goodness. Did I blog that already also? Well anyways, just wanted to report that Colby is doing MUCH better.

There is no way I could thank each of you separately for all the wonderful calls, texts and Facebook posts. I'm sorry I haven't answered a lot of calls. Usually I'm busy with kid. He eats every 3 hours and is getting treatments every 4 hours, and I'm making sure that all stays on schedule. Plus there is changing him, turning him, talking with doctors and nurses, figuring out the next step, etc. My mom has gone home for a couple of days, and my dad is with us here now. Don't know when we'll get discharged. Can't really start talking about that now. Need to get Colby more stable and make sure none of this funny business happens again. What he went through overnight was horrible. But thank God we were here when it happened. What if we went home and his lung collapsed over the weekend? Can you say "disaster?!" Thank God the attending doctor just happened to be standing at the end of Colby's bed when Colby just happened to be getting his CoughAssist, and the doctor just happened to be paying attention and noticed Colby's left side not rising. I think we avoided even more trouble with that. So see, I can always, always, always find some good in a situation. That's because the love and support of my family and friends keeps me strong. Every time you all text or say, tell Colby we love him and are praying for him, I do. Thank you everyone. I feel like when we get home we all need to schedule a Group Hug Party. More soon.   

WHERE TO BEGIN?!?!

Were you thinking, after hearing Colby's left lung collapsed, wow I sure hope Colby's stay in the hospital is gets better from this point. Well, think again! I mean it's better now, but was awful overnight. I'm pretty sure the last 12 hours in this hospital have taken 10 years off my life. Here's why.

First of all, I didn't like our respiratory therapist last night. But let's be honest, right now I don't like anybody. Except Colby and my mama. I'm so over this hospital stay. First of all, this respiratory therapist hasn't had Colby as a patient before. Not good. Someone who knows Colby and knows if his treatment is going well should be doing his treatments overnight. And that someone would be me. I gave her a chance. His treatment was due at 8PM. At 8:05 she wasn't in Colby's room, so I started his treatment. I let her step in, and she fucked up a couple of things that I feel are very important so I was like, that's it. You gots to go. I did Colby's 12AM and 4AM treatments. I was nice about it. I just said I felt helpless and wanted to do something to help Colby, so I would prefer to do the treatments. That's a true statement also. Actually I can't complain, she's the only person assigned to Colby I haven't cared for this hospital stay. Seriously though, she could have fallen from Heaven, assigned by God himself to give Colby his treatment, and I still wasn't going to like the way she did it. Can't help it, I'm in Mama Bear mode!

As the night progressed, weird things started to happen with Colby. I noticed his heart rate was low. Very low. As in, hey kid, what's up with you low. Colby slept through both treatments, which he never does, and his heart rate dropped into the 50's. If we are home and Colby is in a deep sleep, his HR should be low 70's/high 60's. I thought that was very odd. Then his body temperature started to drop. Low. Very low. Normal temperature is 37.0 Celsius. Colby's was 35.4. Also very odd. And scary. We turned the heat up in our room and wrapped Colby in warm blankets trying to get his temperature back up. Then his blood pressure was low. Very low. This is the exact opposite as normal. Usually when Colby is in the hospital, his BP is high, due to what I assume is agitation/anxiety, along with being sick. Colby's blood pressure dropped to 87/51. They even took it manually to double check. Colby's respiratory treatments were odd, too. He wasn't coughing up anything. Nothing. There were no secretions out his nose, mouth or trach. And if you read this blog at all, you know Colby is a "slobber box" and we are constantly suctioning him, especially when he's sick. I'm just going to lay it on the line here folks, I thought Colby was going to die. As a parent, what would you start to think if your child's vital signs were slowing down? The good thing was he was maintaining his oxygen. That part was perfect. Mom and I discussed some things with the nurse. After the 87/51 BP reading, we got the docs on the phone. And then chaos ensued from there.

Around 6AM this morning, I noticed some commotion in the hallway. People were walking around at a faster pace, and it seemed more people were in the hall for that time of the morning. I was thinking oh wow, what's all the scuttlebutt? We were the scuttlebutt! The whole Medical Response Team and several people from the TCC came in and we started discussing options. Do we do the bronchoscopy on Colby? Do we transfer him to the PICU? What is causing all this mess? The doctors weren't in much of a panic, I guess because Colby's oxygen was so steady. On the insides I was shaking uncontrollably. I was terrified of what was going on with Colby. I don't wish the thoughts and feelings I was having on anybody, ever. On the outside I was keeping it together, trying to sort out all the information the doctors were throwing at me. It was agreed that Colby would stay in the TCC for now. We ordered a chest x-ray, which showed much improvement over yesterday's. They ordered every lab known to man to check for further infection. How in the world can this kid still have infection?! He's been on 5 different antibiotics in the last 2 weeks, geez!

And just like that, in typical Colby fashion, no rhyme or reason, he started to improve. His 8AM treatment was more typical. His last blood pressure reading was 117/79. His heart rate is in the 80's to 90's. Last time they took his temperature, 37.1 Celsius. Urinalysis, normal. Blood gas, normal. Blood count, normal. The bronchoscopy has been put on hold and we can feed him as usual. Unreal. Unbelievable. But I swear this is exactly what happened. The child who had me terrified for his life is now jabbering away watching Frozen like, hey Mom, what's up? I don't know whether to cry, laugh or scream.

Colby's doctors have been very patient and have spent a great deal of time talking to Mom and me about the events that occurred overnight. And the answer is...we really have no answer. They said sometimes when you bump vent pressures up as much as we did yesterday to open up Colby's lung, it sort of sends a message to the brain saying, hey, we don't have to work as hard to keep up with this body. Which might explain the slowing in some of Colby's systems. His attending said look, if Colby continues to improve, his labs come back ok, and if we never find out the answer as to why this happened, then so be it. As long as he gets better. We may never have a definite answer. My explanation is you know Colby, he does things Colby's way.   

I know this is a very long blog update, and I apologize. Just wanted to let everyone know what was going on. Plus blogging/writing seems to calm me down a bit, helps me collect the 1,742,865 thoughts running marathons through my brain. Colby is currently doing great! If you walked in his room right now, you'd never know all the shit that went on overnight. Colby, Colby, COLBY!! You big stinker! I'm going to try and get in a nap today and will blog later tonight. Hopefully reporting Colby has continued improvement. Thank you everyone who continues to stay in touch and pray for us. Right now it's much needed and much appreciated.

CAN'T BELIEVE I'M TYPING THIS

So, give us 10 hours or so, and we can really shake things up. When I last left you from Blogland, everything was on schedule for us to be discharged on Saturday morning. Not anymore. Colby hasn't had a great day. We noticed he wasn't improving at the same speed he has been. Plus he was having some trouble keeping his oxygen up. Nothing crazy, his oxygen was hanging around 93-94. Just made you stop and look at Colby like hey, what's going on with you, kiddo. The RT and I were doing Colby's afternoon respiratory treatment, and the attending doctor happened to be in our room. He said hey, Colby's chest is rising much more on the right side than on the left. Ah shit. You wouldn't notice it if you were up by Colby's chest doing his treatment. But I went back to where the doctor was standing at the foot of the bed and sure enough, the left side of Colby's chest was not rising properly during CoughAssist. Red flag. Big freakin' ugly red flag. We immediately got a chest x-ray, which shows...drumroll please...Colby's left lung is collapsed. Completely collapsed. I know, right?! I can't even believe I'm reporting this, but it's true. The doctor just came in and we talked it over. Hence, therefore, we had to come up with another plan, which is as follows:

It's safe to say we're NOT going home on Saturday. Ambulance transport has been cancelled. We've raised the pressures on Colby's vent. We'll return to doing respiratory treatments every 4 hours instead of every 6. We're hoping, praying, that these changes help "pop" that left lung open. If not, they will want to do a bronchoscopy on Colby tomorrow. In talking to the attending doctor, I said you know, some of us in the SMA world think these bronchoscopy procedures are done too often. Can you guarantee that if you do this bronch, you will find the source of the collapse (probably a big plug sitting in his lung) and be able to fix it? He said, well, no. Fantastic. Super duper. So, we're praying the extra treatments and upped pressures fix the collapse. However, knowing Colby's history, we'll probably have to go to Plan C. That would be the bronchoscopy. I don't know yet. Not knowing. It's horrible.

It's going to be a long night. Colby will be getting treatments at 8PM, midnight, 4AM and 8AM. And I'll be making sure they are done exactly on time. I'll be up assisting with every one of them. So, Colby could use a couple prayers if you have some to spare. We changed his vent mode a couple days ago. Tonight we've changed the vent settings. We're adding water to the cuff. We're increasing respiratory treatments. This needs to work. SOMETHING needs to work. Colby has been sick since September 17th and we've been in this hospital 5 days. I don't want this to drag out into some disgusting 30-something day hospital stay like we've had in the past. I'm so frustrated and I'm so sad for Colby. If anyone wants him to get better, I'm sure it's HIM. Hate seeing my sweet boy like this. I'll update as soon as I can in the morning to let you know how the night went. Bleh.

48 HOURS AND COUNTING UNTIL HOME SWEET HOME

What do we want? Discharge? When do we get it? Saturday morning! Yep, as long as Colby continues to improve and/or not get any worse, we're out of here Saturday morning. I'm not sure if we'll have an ambulance ride or not. It's doubtful. So when my dad comes up tomorrow, he will bring the van and Colby's power chair. Going to make sure we have an extra oxygen tank on hand also. We need to keep our fingers crossed that there are no traffic issues. Colby is going to struggle as it is sitting up the 100 miles from here to home. I know he's ready to go home. I don't think we're rushing it at all. He's getting better rest and tolerating his respiratory treatments so much better than he was a few days ago. But sitting up will be an issue. It always is when Colby is sick and/or recovering from an illness. Ambulance or not, we're getting this sweet boy home before he catches some other nastiness in the TCC.

Now, if you don't like or have an appreciation for cussing, then please skip over this paragraph. I'm so fucking mad at the moment I'm shaking. As soon as rounds were over this morning and it was decided Sat morning was the target date for discharge, I called our nursing agency. They informed me they had NO nursing supervisor to come out on Saturday and we couldn't have nursing until Sunday. Excuse me?! WTH did you just say?! Here's what happens. When Colby gets admitted to the hospital, he gets "discharged" from the nursing agency. Once we get home, we can't have a nurse come out and work until the nursing agency does a "resumption of care". Well, there is no one available Saturday to do that. Both the nurse supervisors will be out of town. Isn't that just fabulous? Just freaking wonderful, perfectly F-ed up fabulous? Thank God I can take care of Colby by myself. It's not that we HAVE to have a nurse on Saturday. It's the point that we NEED one. In this instance, I NEED the help, and that's not something you hear me say often! I'm tired, need to get us unpacked, check the mail, empty the fridge, etc. All that crap that needs to be done when you've been gone for a week, on top of take care of Colby, who is still getting cough treatments every 6 hours around the clock to knock out the rest of his illness. Stupid asshole nursing agency. I made it perfectly clear how I felt with them when I was on the phone with them this morning. You know I did. It's just ridiculous. Okay, needed to vent. It is what it is, and I'm going to deal with it. Sunday morning at 9AM there will be a nursing supervisor at the apartment to do a resumption of care. I'm trying to line up nursing for Sunday now.  

There's been some debate on whether or not we should or shouldn't be putting water in Colby's trach cuff. At home, we have never put anything in his cuff. We were never told to do so. But when he had his spine surgery and also with this hospital stay, they put water in his cuff. So I said okay, we need to get this straightened out so I know what in the crap to do with this cuff when we get home. They ran a NICO test on Colby's trach last night. They figure out, when Colby is sleeping, how much water needs to go in the cuff to maximize Colby's volumes, minimize his leak, etc. Basically figure out if water, and then how much water, in his trach cuff helps him breathe better. Turns out Colby needs anywhere from 2.2-2.5 mL in his trach overnight. Huh, who knew?! They are going to read over all the data from last night's NICO and tell me what to do from this point forward. Glad to be getting this done. Anything that will help Colby breathe easier/better is okie-dokie-artichokie with me.
 
That's what I know. Can't wait to get home! One week in the stinky hospital is enough. Can't wait to have my sweet boy get back to his normal funny, eye-rolling, jabbering self. Can't watch to watch football on my own dang couch and sleep in my own bed. Can't wait to see my friends, hopefully go out to dinner with some of them one day next week. Come on, Saturday morning, get us home!

WONDERFUL NEWS WEDNESDAY

Yep, Colby is moving right along. More progress in the right direction. We've bumped his oxygen down a bit more. He started at 30%, now he's at 24%. He only has to go to 21%, which is "room air" and will no longer need extra oxygenation. He would probably do fine if I went ahead and put him on 21%, but no need to rush. We've been able to stretch out his cough treatments. Instead of doing them around the clock every 4 hours, we're doing them every 6 hours. This is a great improvement and will allow Colby (and the rest of us) to get more rest. Seriously, my son is a kickass rock star stud! They have changed his Clindamycin to g-tube form instead of IV. Also the discharge nurse is working on a preauthorization for Tobramycin drops for when we get home. Apparently they are very expensive and need to be ordered from a specialty pharmacy. We also got his scheduled trach change done this morning and when I left to take a little break, Grandma was putting in a SpongeBob DVD for Colbster. I'm sure he's perfectly content with that.

We started to do a little planning for discharge. If Colby continues at this rate, we're thinking Friday or Saturday. Can you say YES, please and thank you. The only concern is transport home. We don't think insurance will approve an ambulance ride home, since Colby won't be in an "emergency" situation. That's a matter of opinion, but when it comes to insurance coverage, my opinion of course doesn't matter. So if we have to take him home in his wheelchair in the van, that will prove quite interesting. There is no way in the world he will be able to tolerate sitting up that long. We're going to try to sit him up in bed today. This will be the first time the kid has sat up in any way, shape or form since last Friday. And if you remember, that didn't go so well. I guess I'll worry about the ride home later. Right now just concentrate on Colby continuing to improve.

That's about all I know for now. My mom is here with us. She was supposed to bring up some yummy, healthy veggie soup they made, but the goofball left it at home sitting in the fridge. Dangit, Linda. Cafeteria food is expensive. My stupid, hacky cough has lessened considerably. We did a load of laundry this morning. I was down to my last pair of clean undies. Wish I could go back to the room, take a nap, and when I woke up we were home, getting back to our "normal" lives. Super thankful for this hospital, but so ready to get out of here. I guess I can't complain, though. This is the first respiratory illness Colby has had a hospital stay for since getting his trach in May 2012. Pretty impressive, sweet boy. Hopefully once we get home, we'll go another 2+ years before another hospitalization. Or 3. Or 4. Or 5 years, just sayin'.

Hope to keep the good news coming. Hope that I'm blogging from the Cincinnati Children's Hospital Family Resource Center just a couple more days. Bye for now, kiddos.