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.

SUNDAYS ARE GOOD SNUGGLE DAYS, DON'T YOU AGREE?

I'm getting ready to go start Colby's cough treatment. Then after that, yep, you guessed it, we're hitting the swing. Yesterday we went outside 2 different times for some swing time. It was hot as crap in the afternoon, so I hooked up a fan to blow on Colby. I cooled off by drinking cold beer. Hey, whatever works I suppose.

We're pretty much in countdown mode around here. In 30 hours or so, we'll be hitting the road for Cincinnati Children's Hospital. Then 48 hours from now, Colby will be in the middle of his tracheotomy surgery. So here's the agenda as of right now. We're to check into the TCC at Cincy Monday afternoon around 5:00/5:30, spend the night. Colby's surgery is scheduled for 7:30 Tuesday morning. Fine with me, no sitting around all damn day waiting. We all know waiting patiently is not my forte. It's my understanding that if all goes well, we'll stay in the PICU for 5 to 7 days. On day 5 post-op, ENT will do Colby's 1st trach change, as his airway will still be healing and considered critical. After that, we'll go down to the TCC (also called the Trach Unit, also called the Transitional Unit) and we'll hang out there for a while for trach training. Also have to work on getting nursing lined up for when we get home. Then on June 22, ENT wants to do a bronchoscopy, so we've decided to also do teeth and testicles at that time. Yep, just get 'er done I say, that way I don't have to worry about these procedures ever again! So yeah, we'll be in Cincy for quite a while. And no, I'm not near ready, physically, emotionally or mentally. Too damn bad I guess, huh? Better get that way, and quickly! Colby and I talked a lot about the whole trach thing quite a bit, but I need to talk to him some more. I keep putting it off.

Our time home has just flown by. I know I keep saying that, but it's true. Spent the day yesterday doing all the crap you do before you leave to go out of town. Went to the bank, picked up prescriptions, put gas in the Terdmobile, went to the grocery/liquor store. Did 2 loads of laundry and have another going this morning. Started making a list of things to take with us. Blah, blah, blah. More of the same for today. The only plan I have is to go to Mass. Guess I'll actually have to bathe today before I go there, huh?

Need to get going with Colby's morning routine, so I'll wrap it up for now. More later. Just be warned, this Cincy visit is the only thing on my mind, so you'll have to hear a lot about it from here on out. Can't help it. You'd be the same way, too, if your kid was getting ready for surgery, then more surgery, and a 5 to 6-week hospital stay. Just sayin'.

SHAME ON ME!

It's been over a week since I've done a blog update?! What's wrong with me?! Of course you're chomping at the bit to know all things here is Russland. Well, I don't know what to say, I don't have a fabulous excuse as to why I haven't blogged earlier. Time has simply gotten away from me. So let me fill you in on all things Super Mama and Colby, recent past and near future.

Colby and I have spent our time together, HOME, for the most part just hanging out. He's back to a normal treatment schedule. No nurses, RTs, or doctors coming in every 17 seconds. It's wonderful to have our privacy and some sense of normalcy back. Colby is able to spend a lot of time off bi-pap, which is great, another shining example of how freakin' awesome my kid is. He has, however, had some issues sitting up. His oxygen stays fine, but within just a few minutes his heart rate is up to 130 or so, and that's at least 10 or so point higher than it should be. If he does sit up it's in his Tumbleform chair as he doesn't need his back brace on to sit up in it and he's more comfortable that way. I also haven't messed with his eye gaze much. I know, I know, this is the key that will unlock Colby's communication, and the more I have it in front of him, the quicker he will learn it. Well, sorry, just haven't been in the mood. Most of our time together has been in cuddle mode. We spend a great deal of time just "being" together. I have made an effort to give Colby lots and lots of PT. He seemed to be tight after we got home from the hospital, particularly his ankles and hips.

The weather has been great here. The only one single thing I wanted to make sure we did while home was swing. Dad brought over my swing last week so I could get Colby outside in the beautiful sunshine, and Colby could swing and jabber the days away. Perfect, let's do it, NOT. I'll be a monkey's ass, the apartment complex decided to do a huge drainage project while we've been home. My yard has been completely tore up for over a week, along with the fact that they stored this huge black, corrugated piping in the way of where we put the swing. Really, I mean seriously. Talk about crappy timing. They just got the pipes moved yesterday and we got the swing back where it goes. Now it's supposed to be muggy and hot the next couple of days (big sigh of disgust). So I'm getting Colby up early and by golly we're getting outside and swinging. Then we'll go back tonight when the heat of the day is mostly gone. Yes, we will get in some swing time this weekend, because Mama said so!

Colby gets 50 hours of respite nursing every 6 months. Not a ton but hey, we'll take what we can get. I've been trying to use a nurse whenever possible between these hospital stays. This past Tuesday I had dinner with a BFF Pammie from my old job at the school corporation. We hit Cheddar's for dinner, then did some shopping for me some casual hospital-friendly clothes at Walley World. She pointed out how sad, we weren't shopping for bathing suits or going out clothes so I could go on vaca, but rather clothes for hanging out in the hospital for weeks on end (another big sigh). But you do what you gotta do, right? Oh yeah, and I also bought beer. Picked up a sampler box of Blue Moon, pretty good stuff I must say. Wednesday night was the Lady A tornado benefit concert here in Louisville. I went with my BFF from high school and her gang. It was a sweet deal, they paid for my ticket AND picked me up and dropped me off back home. Can't beat that with a stick, can you? What can I say, Lady Antebellum was fantastic, awesome, super good in concert. One of the best concerts I've been to in a very long time. Their voices are incredible. This concert brought national media attention and awareness, along with $285,000 for tornado damage funding for the folks in Henryville that were affected by the tornado back in early March. Shut the front door, how great is that? Very glad I got to be part of it.

Last night was Wine Night. For the last 6 years of so, the 4 of us have met once monthly for this blessed event. I think we figured out that I've only been to 1 in 2012. Disgusting! We all make every effort to get together, just hasn't been in the cards for me lately. So I had a great time catching up on what's been going on with that group of girlie friends. Today/tonight will be spent chilling out around here. Dad is coming over at 10:00 this morning so I can do some last minute errands. Other than that, it's chill out time for the boy and me. We've been home from our lovely 37-day hospital stay for 20 days now. Time has flown by! Does anybody have the super power to freeze time?! If so, please, please let time stop ticking, just for another week or so?!

Okay, it appears I'm very chatty this morning, so how about I wrap this up for now? There's a lot more to report on what lies ahead for sweet Colby boy, i.e. trach surgery next week. I'll update on that later on tonight or tomorrow.

CAN YOU SAY, EMOTIONAL ROLLER COASTER?

It would seem I'm a bit of a basket case lately. That's to be expected I guess? I hear good news, I cry. I hear bad news, of course I cry. I'm at my happiest when I'm out with friends, just getting away and escaping it all for a while. No that's not right, I'm at my happiest when it's just Colby and me, and me and Colby, cuddled up on the couch, chilling out. My sleeping (or I should say lack thereof) is all messed up. How in the world can you be physically and emotionally drained by the end of the day and the NOT be able to sleep? Makes no freakin' sense. I think about Colby's upcoming surgeries and going back to Cincy, I cry. I make a roast and gravy and cry because it's simply the best darn thing I've made and eaten in weeks. See? I'm a fruitcake. I think a lot of it is realizing this being home gig is extremely temporary. In 12 days we'll be back at Cincinnati Children's. And while I'm thankful this wonderful, fabulous, hospital exists and is only 2 hours away and Colby is lucky enough to be seen by some of the best doctors in the country (that's no exaggeration) I DON'T want to go. I DON'T want Colby to have to undergo surgery. I DON'T want to learn trach care. I DON'T want to spend 5 to 6 weeks away from home. I'm just going to have to realize it's just too damn bad what I want and don't want. It is what it is, it's gonna be what it's gonna be. Apparently I'm famous (probably infamous) for saying, "just suck it up and do it". So now it's time to listen to my own advice. Time to pull out those big girl panties again. Like the joke says, just hope the elastic in them doesn't break soon. Then I'd have to really show my ass, haha.

And speaking of showing one's ass, I pretty much did it today. However, it was justified. There is a certain piece-of-crap home health company we've had many, many issues with over the years. Today was no different. Colby's new hospital bed was being delivered today. Exciting! At 10:00 this morning. So the crap company was supposed to come pick up the old bed between 9:00 and 9:30. So I got up early, got ready, busted my butt to get Colby up early, got him moved out to the couch and guess what? Yep, piece-of-crap company didn't show. Now, the wonderful, professional, very nice men from National Seating and Mobility were here promptly at 10:00 to assemble the new hospital bed. They could've been total terds and said hey, we can't do our job since this other bed is still in here. But they didn't, thank goodness, or I honestly think I would've had a meltdown. They took the old bed apart and put Colby's new bed together while I was on the phone ripping piece-of-crap company some new butt holes. Again, I can't stress enough how important it is to keep notes. I had the date, time and person I talked to who was supposed to get someone here on time to get the old bed out of here. So I have hospital bed parts lying around in the hallway, kitchen, etc. Piece-of-crap company calls and says they'll have someone here between 4:30 and 7:30 to pick it up. Oh hell no! It took every ounce of restraint I had not to go Henryville on those morons, and I did a pretty good job. Needless to say the old hospital bed was out of here by 12:15 (smiley face). I don't know who they think they're messing with. Didn't they get the memo, I'm Super Mama. There will be no F-ing with me anymore. About anything. Just do as you promised you would. Get my sweet boy the supplies and equipment he needs, when he needs them, and everything will be ducky. If not, you'll have to deal with me and my excellent not taking. I am, however, in the market for a new home health care company. I've had another local company recommended to me by several people, think I'll give them a ringy-dingy when I get some time.

But let me just say the new fancy-schmancy hospital bed is awesome! It's 10x better than the one Colby had. Nice, comfy mattress. All electric. Even has an IV pole that can be used for his feeding, so no need for a separate feeding pole now. Woot woot. I put Colby in his new bed and was showing him all the buttons. Whole bed up and down, head only up and down, feet only up and down. He's proud as a peacock in that new bed. So I guess all the bullcrap was worth it.

Colby is doing great. See pic, doesn't he look FABULOUS?! As my friend Kim said, it's as if Colby is saying, "Look Mama, no tubes!!" He's able to spend more and more time off his bi-pap through the day. He hasn't taken a nap in over a week, which is totally his normal self. He's the most no sleep during the day kid I've ever known. Even as a baby, no naps for that crazy kid. Guess he thought he would miss something if he dozed off. His heart rate gets a little high when he sits up after 20 minutes or so. That's a little discouraging. Not sure if he just needs more time or if it's because of those compressed airways on his right lung. But as soon as you put on his bi-pap he's fine. Actually I think Colby has needed some alone time, too. Sometimes he's more than content to just hang and watch SB.

Not much else going on. Saturday was Derby. Colby and I stayed home. I had gone out the night before and met up with some friends to watch a local band. I left at 9:30 and was home by 12:30. What a party animal I am! Colby picked the Derby winner and I'm so freakin' mad, didn't make a bet. I named off all the horses to Colby. He made noises at Take Charge Indy and I'll Take Another. We went through them all again, same thing, but I thought he was making more noise towards T C Indy. So for Colby I bet an exacta box for the 2 horses, then bet T C Indy, NOT I'll Take Another, to win. Dangit, why didn't I just go ahead and put another few bucks on that one to win?! Because I'm a dorkasauras, that's why. I chose Gemologist to win. I think that horse is still running, isn't it? Was able to go to Mass on Sunday. Very nice to get back to the Cathedral and see my friends there. Went out to dinner with some girlie friends last night. Nothing like some girlie time to make things a little (okay, a lot) better. Been working on redecorating my bedroom. I'd say I'm about 80% done in there. I'm rearranged my furniture 3 times and put on 2 different comforter sets. Hey, it's a woman's prerogative to change her mind when it comes to decorating. Colby's bedroom will be next. That will have to wait until we're home from the next lovely hospital stay. Been reading the 2nd book of The Hunger Games series. Loving it! As a matter of fact, I'm going to wrap up this update and go read a bit. Then off to Sleepy Land, or at least I hope so. 

WHO'S PARTYING THEIR PANTS OFF FOR DERBY? NOT US!

Greetings world! How the heck are ya? Colby is back in his room still sawing logs, so I thought I would update before starting his morning routine.

Colby is doing great. Super duper, unbelievably great really. We've been able to space out his cough treatments more, so we haven't had to get up much through the night over the last few days. Yay for solid sleep, it's a goooood thing. During the day I still give Colby cough treatments every 4 to 5 hours, but when I put him to bed if he's not too "gunky" I'll go 7 or 8 hours before the next one. Today is the exception. He is back there still sleeping. If I had stuck to our schedule he would have had a treatment 2.5 hours ago. But he just looks so darn cute and peaceful, I'm not going to bother him. Let the boy sleep in, I mean it's the weekend for pity's sake, right? Although that doesn't really matter to us. All days run together it seems. Got brave and sat him up the other day. Not in his wheelchair but in his Tumbleform chair. He doesn't need his back brace on in the T-form b/c it has a special pillow that helps support him. It's pretty cool really. You pump all the air out of it and it conforms to him and helps hold him up. He sat up for 1 whole hour, 30 minutes without bi-pap. Now that's what I'm talking about! Colby ain't playing, he's getting better for sure. Sitting up is always the test for him, and he's done great with it so far. Might get crazy and try to get him up in his wheelchair today.

What's next for Colby, short term? More of the same I suppose. He's unofficially on lock down until we go to Cincy for trach surgery. We do have plans to go to a birthday party in a couple of weeks. If the weather cooperates and I think he's up to it, we may go to the zoo one day. Other than that, I doubt I get him out much. Anyone is more than welcome to come see him, unless of course you've coughed, sneezed, sniffled or are even thinking you might cough, sneeze or sniffle some time in the next month or so. If that's the case, please stay away!! Colby needs to be at his healthiest for this trach surgery and I don't want anything screwing it up.

It's Derby week here in Louisville, which basically means this town goes ape-shit crazy, partying for 2 weeks straight, over a horse race that lasts a little over 2 minutes. Hey, no problem, I get it. Of course I'm not making it to Churchill Downs today, but that's okay. I have BIG, BIG party plans today. Are you ready for this? Hold onto your socks. I'm going to stay home and make a roast. Woot woot, party like a rock star. Actually Colby and I kicked back yesterday and watched the races. I enjoyed a few adult beverages. These flavored Pinnacle vodkas are quickly becoming my new thing. Pineapple vodka, shut the front door, it's good. I can't gripe, I have been able to get out a bit. Went out Wednesday morning and got my mani/pedi, used my gift certificate from Christmas. It was the 1st time I had driven since the end of March. Think about that. I had the windows down, AC and radio cranked, singing along in the Terdmobile. I was in my own little happy, happy world. Just hope nobody took pics ha ha. Also went to the grocery and liquor store, too. I had a piece of paper, grocery list on the left, liquor store list on the right. Also went to the bank, post office, blah blah. Thursday night I went out to dinner with by BFF Joni. "Our thing" is to go to Ramsi's. It was a perfect night to sit outside, have a couple drinks, people watch (i.e. make fun of goofballs and get mad at the tall, skinny B's walking through). She was nice enough to offer to be the DD. Our waitress was really sweet. For some reason, that's very important to me, gotta have a cool server. Last night after getting Colby to bed, the ex came over and stayed with him a couple of hours. I met my friends for a couple hours, home by 12:30 like a good girl. Mama can't burn the candle at both ends like she could before.

Okay, that's enough for now. The bottom line is, Colby is doing well, which means I'm doing well. Seriously, he amazes me more and more, all the time. What a fighter he is! Trying not to worry about this upcoming trach surgery/hospital stay, but it's always in the back of my mind. That'll be another month away from home. Only 17 days away. Ok, need to have a talk with myself. STOP worrying about it, at least for today. Enjoy Derby. Eat roast. Spend QT with kid. It'll all be fine.  

UPDATING FROM HOME SWEET HOME

Colby and I are home finally, after 37 lovely days in the PICU at Cincinnati Children's. (Hope you can recognize sarcasm when you see it). Today has been emotionally charged for me. I have lots of thoughts and feelings running around in this brain of mine. But I really don't feel like getting into all of that right now. So I'll just stick to the facts and tell you the 411 for the last few days.

We got home Saturday afternoon. The ambulance was right on time picking us up. One of the EMTs was very nice. I enjoyed talking to him on the ride home. The other EMT had the personality of a door knob. He didn't even introduce himself, say hi, bye, boo, kiss my butt, nothing. I find that very unprofessional. And speaking of unprofessional! I shit you not, we were leaving the hospital and he had 1 hand on the steering wheel and 1 hand down in a bag of Munchos. I'm not kidding, I should have taken a pic! When we got home my dad was here to help us unload everything. Then my BFF Kim came over, bringing me Chicken McNuggets and Diet Mt. Dew, to help me get things unpacked. Mom and Kenny also came over to bring over some stuff I had sent home with Mom. Once everybody cleared out, I went back and cleaned and disinfected the crap out of Colby's room. Dusted, wiped every piece of equipment down, changed out all the filters, tubing and masks. No way any germs survived that cleanliness onslaught.

The last couple of days have been a combo of trying to relax and get loose ends tied up. Lots of phone calls to make. My favorite thing to do as you well know. Not really, gosh dang, I despise it! I've started keeping a notebook of who I called, what day and time I called, the result of the call, etc. I learned in the hospital that having good notes can prove extremely helpful. Colby is doing fantastic. Today his 1st bipap break was a little iffy. He was able to stay off an hour, but after 30 minutes or so his heart rate was between 122-130. A little too high for my liking. His bipap breaks after that were much better. He was able to stay off bipap for 1 hour 15 minutes, no problems. He's been taking naps, which is great. Gee, I can't imagine why he's tired, just because he hasn't had a full night's sleep since around March 20 or so.

As for me, well, I'm kind of a mess. First of all, I'm not completely caught up on sleep. Having trouble going to sleep and staying asleep. Guess I'm still on hospital time. I don't think the emotions from this hospital stay have caught up with me yet. Sometimes you need a little time to process and work through it all. Would you agree, or am I just slow?! I'm trying to balance spending as much QT with Colby and getting out and doing adult-type activities also. I have a gift certificate for a mani/pedi that I got for Christmas. It'll expire in June so hey, Mama ain't no fool, I'm going for my pampering tomorrow! I think it will do me good to get out for a bit.

We were goofing off one day at the hospital, imagine that, and decided that we no longer like "E" words. For example, the word extubation literally sends cold chills down my back. Considering Colby's history with this, it's understandable. Another stupid "E" word, extravasation, meaning the leakage of IV drugs into surrounding tissue. You remember that special day, when Colby's port wasn't working properly and his TPN leaked out? That was indeed a freaking nightmare. Edema, what a jacked up term that is. The "edema" around Colby's port was making accessing the port extremely difficult. Yeah, no crap, which explains the extravasation that followed. Effusion. Now there's a word I don't ever need to hear again as long as I live. Effusion is a buildup of fluid outside of the lung. Colby had effusion forever it seemed. Took weeks to clear it up. Thank God for postural drainage. Of all the fancy equipment and meds, positioning Colby with his head lower than his feet proved as effective as anything for getting rid of that effusion. Go figure.

I'm going to wrap it up for now. Just wanted to let everybody know we're doing pretty darn good considering how the recent weeks played out.