THIS IS GOING TOO WELL, AM I DREAMING?

Hey, I have more good news to report. Colby sat up today! Not only did he sit up, he sat up for half an hour, in his power chair, and his oxygen didn't drop and his heart rate didn't go up. Oh goodness, do you know how long it's been since we've been able to say that? Yay trach! I just can't wait to let him start driving his chair again, well, trying to drive it I should say. Can't wait to take him outside in the sunshine for this beautiful weather we're having. They have a garden area off the TCC that's really nice. Colby slept for 11 hours last night. Holy crap, he was one sleepy boy. Do you know the last time he did that, too? Maybe never haha. That was probably the 1st good night's sleep he's had in a week.

That's news enough really. I'm thrilled with how well he's doing. Colby had 2 nurses today, 1 was fresh out of nursing school and has to be monitored by another one with experience. So the more experienced nurse had lots of time to do more trach training with me. I'm getting my checklist completed as soon as possible so we can get the hell out of here as soon as possible. The ex is coming up Sunday morning to do his 1st trach change. Mom went home for a couple of days, so Dad will be hanging out with us for a while. Tomorrow we're going to try some windows with Colby, we haven't done that yet. Meaning take him off the vent and see how he does with no pressure support. I'm nervous about that, but it is what it is and we'll deal with it as it goes along. They also tried to measure Colby for a PMV (Passy-Muir valve) today but Colby didn't cooperate. He kept holding his breath each time they put it on and they couldn't get an accurate measure of the pressure he would need to use one. A PMV will help Colby move air properly so he can get his jabbering back. We'll just try that again soon too I guess.

Think I'll go sit outside for a few minutes, then head back to the hospital. I'm at Ronnie Donnie just long enough to blog. Gonna head back to sweet Colby boy and let Dad come over here and stay the night. Later, taters.

TUESDAY'S TOPIC IS...TRACH, OF COURSE

Been a busy day for us in the TCC. I knew it would be with the weekend and holiday over now. It's been busy in a good day. No bumps in the respiratory road for Colby SO FAR. I did my 1st trach change today and I don't mean to brag, but I did a pretty darn good job. Of course I had a nurse and RT over my shoulder the whole time talking me through every nanosecond of the process, but that's okay. Colby and I both survived haha. They've changed Colby to an extended trach, which is great because it won't be rubbing up against his neck and chin(s)! I can tell he's more comfortable with the extended one.The TCC won't discharge Colby until 2 people go through trach training/education. I said, well that's great, but I don't exactly have a 2nd person, I'm a single mom. Doesn't matter, had to find someone. The logical choice is the ex since he lives the closest, and he said he'd do it. I'm going to try and get him up here in the next couple of days to do the next trach change and other trach training. Talked to the super-expert discharge nurse about lining up supplies and nursing for when we get home. It's my understanding they also won't discharge Colby until we have nursing in place. We're in luck in that the 2 nurses who have most recently worked with Colby have extensive trach and vent experience, so I'm hoping they're available this summer and can work for Colby some. We'll only be home 6 to 8 weeks until we come up here again for Colby's freakin' spine surgery. Can't think about that now! Just concentrate on getting home from trach surgery 1st, right?

What else? Well, OT came in and stretched Colby out. Also put in a consult for PT. I want to start trying to get Colby up in either his power chair or a Tumbleform sometime soon. Massage therapy came to see Colby. He loves getting that attention for sure. We played on the iPad. I'm over at Ronnie Donnie right now. Went for a nice long walk since the weather isn't so hideous right now. Waiting for supper to be served. Mom came over here and got our laundry done. And there you have it. That's the summary of how we've spent our day. When I go back over, I'm going to hook up Colby's eye gaze for him, let him play around on it. I talked to the doctors today in rounds. I said I was as guilty as anyone, but often people talk around Colby and not to Colby. I asked them to come in and tell him why they think Colby getting a trach was a good idea. I think it helped, too. Colby is definitely in a better mood today. Thank goodness no more tears. No mama wants to see her sweet boy upset. I guess we'll watch the Reds play tonight, too. Might as well, we are in Cincinnati after all.

Okay, going to change out of my sweaty walking clothes into my "dress sweats" and head to supper here at Ronnie Donnie. Hopefully the good news and progress just keeps coming our way. Adios for now.

ONE WEEK DOWN, HOW MANY MORE TO GO?

Yep, we've been here a whole week now. Actually, 1 week + 5 hours. It's a completely different mindset this hospital stay. We're not just sitting in the PICU waiting, hoping, praying that Colby gets better, cringing every time the words "intubate" or "extubate" come up. We'll never have to hear those stupid words again! Thank you Lord for that. 

Yesterday ENT came in bright and early and did Colby's 1st trach change. Took a total of maybe 5 minutes. They said his trach site looked great and that we were ready to be shipped off to the TCC. So we were packed up and in the TCC, all before 10 a.m. Oh boy. Anybody that knows us knows we haven't had the greatest experiences on TCC. But I was determined to walk in with a big smile on my face and a good attitude. That lasted about 12 seconds. NO, just kidding! It hasn't been that bad, however, being on this unit has been quite an adjustment. Different doctors, nurses, RTs. Of course they do things differently in the TCC. They're probably sick and tired of hearing me say, "Well in the PICU they do this..." or "When we were in the PICU it was done that way..." I'm a lot better today than I was yesterday. While we were up in the PICU, they didn't have a Trilogy machine so we had to use another brand of vent for Colby. Then when we got to TCC, they put him on a Trilogy. Change #1. We had decided not to mess with Colby's pressure settings in the PICU. He was doing just fine the way he was, and why bother when we were going to change machines? Plus that's what they do more of in the TCC, fine tune pressure settings. So they immediately started playing around with Colby's vent pressures. Change #2. Then there were several little changes here and there and before you knew it, I lost the ability to form a complete thought and/or sentence. My head was just spinning. For a few minutes I thought oh shit, what have we done? Now I'm glad to report things are more settled. They have left Colby's settings alone for a while. I won't officially start my trach training/education until tomorrow, but I've already done several things and been checked off. I keep telling Colby that Mama is in the Advanced Program, haha. Colby's dad was up today. I made him start his training, too. No way we're sticking around in this hospital waiting for him to get his butt up here to complete his trach training. Our friend Amber came up and visited yesterday. We freaking love company, BTW! Makes the time go by so much faster and it's great to have contact with "the outside world" again.

Colby hasn't seemed to have a great day. He just seems blah or sad. Maybe he's just tired from everything, the surgery, the trach change, getting a bath today, the vent changes. Of course this being on the TCC is all new to him, too. It's hard to judge Colby sometimes. I'm frustrated with trying to drag answers out of him all the time. Right now he doesn't even want to answer yes or no. Tired of guessing what he wants or making decisions for him. Wondering if he'll ever get over this communication mountain that seems to be in the way. But now is certainly not the time to worry about that. We have a new trach to deal with right now. Think I'll cuddle up with him tomorrow, spend some major QT talking more about the trach and how I think it will make things easier on him in the future and why I think that way. I need to remember how much he has been through in the last week and that he's probably a little scared, sore, frustrated, etc. Sure do hate to see my sweet boy upset over anything.

I think I get to do my 1st trach change tomorrow. I'm kind of geeked up about it. Yeah, I totally missed my calling. I sooooo could have been a dang good nurse, or a rock star RT for sure. Not sure what the rest of our day will hold. Very little probably. As long as it stays "uneventful" in Colby's room, I will not complain. I'm at Ronnie Donnie tonight and Mom is staying with Colby. So I'm going up to my comfy, cozy, cloud-like mattress now. Good night peeps. Thank you to all who have been thinking about and praying for us. Love ya bunches!

DAY 6 - NOT CRAZY, YET! BUT KINDA CLOSE

Colby update: mostly good. ENT has come in twice a day to check Colby's trach site and ties. They say it looks good. He'll have his 1st trach change tomorrow, early morning I assume. ENT always comes rollin in here around 7:00/7:30. We had a little scare last night. Colby spiked a fever. I freakin' freaked out. They did cultures but wanted to hold off on starting antibiotics. All I could think was pseudomonas here we come. Must have been an isolated thing because he's been fine all day today. Chest X-ray looks fine. Procalcitonin test within normal range. CBC fine. And no temp all day, yay! They accessed the other lumen on his port. The same lady that did it last time did it this time. It wasn't easy, but she got access on the first stick. That's super duper fantastic, but we're going to be so screwed when we get home. Accessing his port is not easy, which pisses me off to no end. Doubt if Katy makes house calls from Cincy to Lou. Still better than blowing out IV's all the time, though. And the coolest news, Colby is already making noises! OMGosh talk about the sweetest sound ever. My mom said she heard him make noise, but I thought her crazy was just making an appearance. Then sure enough, he started doing it more and more. So pleased. Mama update: mostly good also. Just so you can prepare, here are some words you'll be hearing over and over from me in the next few weeks: "bored" "boring" "on my nerves" "that's such bullshit" and "what time is it for crap sake" started a 500-piece puzzle last night, finished it by noon today lol. We'll have some company over the next couple days, which is always exciting. I've been getting out and going for walks but no way I'm getting out in this 90-degree mess. I did the treadmill at Ronnie Donnie today. Actually they have a decent exercise room. Getting ready to find me some grub in the cafeteria, going to watch the Reds (when in Cincy) and then go to bed. Gotta be prepared for this trach change. Hope everyone has a fun, relaxing 3-day weekend. Somebody needs to, right? I'm sure I'll have time to update tomorrow.

HEY GUESS WHAT - MY KID IS A TROOPER!!

It's still two thumbs up here in Trachville. ENT came in bright and early this morning and changed out Colby's trach ties for the 1st time. He does have some swelling from the surgery, which is perfectly normal. They said post-surgery 48 to 72 hours the swelling would be at its worst, so that should start improving over the next day or so. They didn't even round on Colby until 9:30. It's always a good sign when they round on your kid later on in the day. It means he's just not a priority, the sickest kids are, not Colby at the moment, woot woot. Can't tell you what a different mind set this is for me. This is the 1st time we've ever been in the PICU for something other than an emergency, life/death respiratory issue for Colby. I hardly know what to do with myself.

In other exciting Cincy news, we now have a room at the Ronald McDonald House. They called last night and asked if we were still interested in a room. I said, uh heck yeah, and went right over and got our info and room key. Makes it nice for everyone just to get out of this hospital for a bit, grab something different than the same old cafeteria food here, take a nap, shower, etc. RMH has been a lifesaver for us, so next time your picking up some McNuggets, a Big Mac or a sweet tea, throw your change in the RMH box. Trust me, it's a great cause.  

When they say this place is for the birds, they aren't kidding! Tuesday when my Dad was here, he went out for a smoke break. He goes outside and sits on this big rock, same rock he's sat on since we've been coming up here for almost 10 years now. He was sitting there smoking, minding his own business, when a bird lands on the wire above him and yep, you guessed it, pooped right on his wrist. You just had to laugh when he told the story. "Of all that length of wire, that damn bird had to come along, land right above my head, and crap right on me!" It was priceless. It was even funnier when he came back from another smoke break and said the exact thing happened again. I said no way, you're making this up, and Dad said no, he was being totally serious. Another smoke break, another bird poop incident. Well, we were all just ROFL at him, you couldn't help it, especially after it happened the 2nd time. Then I was out last night going for a walk, and I'll be a monkey's butt if a bird didn't boink me right in the head! Scared me to death! I was like, what the hell was that?! This guy was passing me on the street and he said, "A bird, man, a bird flew in your head." Can you believe that, I mean really? Luckily I didn't get crapped on, though.

So, that's our excitement to report, crazy bird incidents. Not much else going on. I'm going to meet with Child Life and PT so we can find Colby Michael something to do besides lie in that bed and watch SpongeBob. I didn't bring his eye gaze up yet because I thought he wouldn't feel like doing it for a few days. Guess I was wrong. So we'll get that up here soon. He has some apps on his iPad so we'll do some stuff with that, too. Little stinker is doing so well, time to move on and get to the fun stuff! I'm off for a walk now. Wish me luck. But before I go, please, please take a moment to pray and send get well vibes to 2 SMA Type I kiddos, Ella and Jazzy. They are very, very sick, much like Colby's respiratory illnesses in the past. They were at a hospital in Indiana that obviously knows nothing about SMA. One of the kiddos is now here at Cincy and I believe the other one is being med flighted to another hospital where they know how to treat SMA. See, this is why we have to keep pushing forward with SMA awareness. While SMA knowledge and treatment has improved greatly over the years, obviously it still has a loooooong way to go. I hate hearing how another hospital doesn't know crap about SMA. Breaks my heart for the families. Been there, done that, it ain't fun. Talk about feeling helpless! Again, I thank God every day for Cincinnati Children's Hospital. I've had issues with them, but in the long run they have taken excellent care of Colby and I'm very thankful they are only a 2-hour drive away. Get well soon, precious girls. We've never met you, but we care about you and want to see you get better as soon as possible.

WEDNESDAY UPDATE FROM PICU

Well, we've been here 45 hours and I'm already starting to count the lines in the ceiling tiles. It's going to be a looooooong month, folks, especially the next few days. There's not much for me to do to help with Colby. I won't start my trach education/training until his first trach change (Saturday) and we go down to the TCC. I still suction his oral secretions, but the RTs suction his trach and do his cough treatments. Colby is doing great. He's had 3 blood gases, the results have all been fantastic. He had an x-ray yesterday post-surgery and one this morning. His lungs are clear, no signs of collapse or pneumothorax, which is ALWAYS a concern if you know anything about Colby's past respiratory history. Not sure what I expected going into this, but I didn't expect him to do this well. Everyone keeps telling me, Amy, he's healthy. He's not sick right now. I've also heard that as far as surgical procedures go, getting a trach put in isn't incredibly painful. By Colby's behavior since surgery, I would agree with that statement. He's on scheduled Motrin and Fentanyl as needed. I had them give him 2 doses yesterday and 1 today. About an hour ago when we repositioned him, he did seem a little uncomfy, so I said yeah, give him some happy juice. I keep waiting for the other shoe to fall. Maybe he'll breeze through all this? I'm praying so. 

We all got some rest last night. Colby had a cough treatment at midnight, then after that I had them hold off until this morning. He's tolerating his cough treatments very well. Still doing them every 4 hours through the day. Not doing his shaky vest for another couple of days, giving the trach time to heal. Mom took the sleep room and I stayed on that pitiful-excuse-for-a-bed couchy thing in Colby's room. I know I shouldn't complain. I was able to be lie down and sleep. But hey, I gotta "rant and rave" about something, right? Can't bitch about Colby's care, it's been excellent. Can't gripe about Colby's progress, it's moving forward nicely at the moment. But don't you worry, I can always find something a little somethin-somethin that's worth protesting!

Went over yesterday to make sure our name was on the Ronnie Donnie House waiting list. I had called Friday once I had a surgery time. We are on the list, but she said it was be "a while" before we got a room. I said what's your definition of a while, 2 days? 2 weeks? She said maybe next week it would be our turn to get a room.

Oh, just in case you wanted to know, it's free pizza day in the parent lounge on the PICU. It's funny, I told someone it was LaRosa's pizza and he said, oh man, I love "Kings Island pizza". It's good, but no where near my beloved Pizza King, trust me.  

Okay, I'll wrap up for now. I'm going to go for a walk around campus. I think the weather is good here today. Better get it in while I can because I hear it'll be 95 degrees in Cincy in the next few day. Yeah, Mama don't do 90-degree weather. I'm extremely happy to be reporting all's well in the PICU for now. Hopefully I'll have nothing to report but happy, warm and fuzzy news over the next few weeks, with an occasional goofy grievance every now and then, of course!

SURGERY UPDATE - HERE WE GO

Things are going swimmingly here at Cincinnati Children's Hospital. You don't hear me say that often, do ya? We drove up yesterday (Colby, my dad the world's pokiest driver, and me) and checked into the TCC (transitional care unit) around 6 p.m. We had such lovely neighbors, another SMA family! Loved seeing them but hated seeing them here in the hospital, know what I mean? Stopped Colby's feeds at midnight. They accessed 1 of Colby's port lumens easily with no problems or crying from Colby or me lol. Started him on fluids. Gave him a cough treatment bright and early today at 6 a.m. They were right on time to pick him up for his 7:30 a.m. trach surgery. We were down in surgery holding by 7:40 I think. While we were there, I asked Colby if he was scared. This time he said no. Of course, there were 3 chicks (nurses and RT) standing around, so he was probably just being a typical macho dude.
 
Colby's surgery went well, done by Dr. Arjmand, who was highly recommended to us by 2 other SMA families. The surgery was, in his words, wait for it...UNEVENTFUL!! Our absolute favorite word. No problems, no surprises, no hiccups, no snaffoos. From there we packed up and went to the PICU, our home away from home. Good to see familiar faces. Our nurse today is Super Steve. Poor guy. He's the one I bitched out last hospital stay when Colby's TPN infiltrated, then told him okay, go find me somebody else to yell at! But I apologized and he doesn't seem to scared of me this time around, haha.

So where are we at 1:49 p.m. Tuesday, May 22? Colby was zonked out for a long time. He's been stirring around for an hour or so. He had his 1st cough treatment, which went just fine. We're holding off on the shaky vest for now. My dad and stepdad have headed back home. Mama will be with us for the next couple days. So I guess the plan is tweak Colby's settings as needed. They took a blood gas 2 hours post surgery and the results were great. Give Colby pain medication as needed. Start learning as much about trachs and trach care as possible. Find out what soups are in the cafeteria today. That's our plan!

Just wanted to send a quick update to let you all know Colby's surgery was on time and uneventful and that so far, he's doing great post-op. If I haven't mentioned it lately, Colby is the sweetest, bravest kid I know. Love that boy! So proud of that boy! THANK YOU to everyone for keeping in touch, calling, sending texts, praying for us, etc. Today starts a new chapter in our lives. I'm just hoping this good luck/uneventfulness (is that even a word?!) continues. More soon.