KNOCK KNOCK. WHO'S THERE? SOFA.

Sofa who? So-fa, so good. Get it? That's 1 of Colby's favorite knock-knock jokes to tell with his communication device. I just couldn't resist using it.

Colby was EXTUBATED at 1:45 today and is doing awesome! I knew we were in good shape today because the same respiratory therapist who successfully extubated him 2 years ago was his RT today. I took that as a good sign. We had to decide whether to use a full face mask or a nasal mask. There are advantage and disadvantages to both. The full face will hold in pressures better. Colby still has so many oral secretions we were afraid the full face would not allow secretions to drain and he would choke on them. The nasal mask would allow his mouth to drain secretions, but we were afraid he would lose too much pressure support and would struggle. The doctor suggested 1 thing, the respiratory therapist the other. So after much deliberation, we went with upping his pressures on the bi-pap even more than originally planned and using a nasal mask with a chin strap. The transition from vent to bi-pap has been flawless so far. They have weaned his oxygen down from 45% to 25% already. He had his 1st cough treatment and breezed right through it. Sometimes they can be tricky because you have to take off the bi-pap mask to do the cough treatment, but he kicked butt. Actually the OT is over there stretching him out as I write this. This has been the easiest extubation this kid has ever had. WAY TO GO COLBY, MY GOODNESS YOU ROCK!! I've even heard a couple of faint noises already, sweet music to my ears! He still has a long way to go. His pressures are set at 28/10 with a backup rate of 22. That's a gigantic leap up from his home settings, 21/7 with a rate of 20. But like I said, he needs the extra support considering he's on a nasal mask.

Where do we go from here? Colby will stay in the PICU for an undetermined about of time. It all depends on his progress, which from here on out will be totally forward, right? He'll be on his bi-pap 24/7, coming off of it only for cough treatments. Then we'll slowly start weaning those pressures down. Then we'll try to start taking him off bi-pap for small breaks, usually 20 minutes to start, then gradually working up to more time off the bi-pap. They call this "windowing" taking windows of time off bi-pap. Once he's able to window for a while, maybe 30 minutes or so off, we'll go up to the TCC unit and from there, once he can window for an hour or so, we'll be talking about GOING HOME! My goal is to get us home by my b-day.

My friend Amber sent up her laptop so I'll be able to update over the weekend. Yay can't wait! Talk to you all soon. More good news to come I'm sure!!!!

UPDATE - THIS WON'T TAKE LONG

Not too much to report. Colby is doing well. They've been running sodium bicarb in his nebulizer. It's really helping to break up the "gunk." He did have 1 destat through the night about 2:30 a.m. His oxygen went down to 87 about a half hour after his cough treatment. But the RT did another cough treatment and that cleared it up. His oral secretions are pretty much under control but he still has a rattle in his chest. I totally don't get this because his chest x-rays are looking marvelous. So WTH?! His antibiotics are done today, so tomorrow we try to "E." That's all I know for now. I'm very sleepy today, already took a 2-hour nap and I'm thinking another one is due shortly. Guess that's it for now. No funny stories. Just not feeling it today.

THANK YOU everyone for the continued prayers and support. It's much appreciated. Hugs to all. Talk soon, AMY

STARTING WEEK 3

Hey, wouldn't you just love it if I said "Surprise, we extubated Colby this morning and everything's fine and we're going home in 2 days!!" Well, no such luck, that ain't happenin'. The decision was made in rounds this morning to WAIT until Colby has finished his course of antibiotics. That will be Friday I believe. He still sounds "coarse" in his lungs even right after a cough treatment, and I just don't think his secretions have cleared enough. So, we play the waiting game until Friday or Saturday. Then I say let's go for it, yank that sucker on out of there! Colby seems really tired today. Of course he is. And he's probably bored. And sad. And discouraged. And scared. And wanting that tube out of his throat so very badly. And overall just ticked off at the world. You can tell he's just sooooo done with this mess. I can't exactly blame him. I've been giving him a new tattoo every day since he was re-intubated last Friday. Today it was one Dani gave him that said "do my best," which I know Colby always does. I know he's fighting so hard to get well. Like I said, I'm not sure how in the world he got so quick so fast. Can't wait, can't wait, can't wait to get this sweet boy home.

Mom is here with me today. Dad went home to Sellersburg and will be back up tomorrow. Where would I be without my parents?! In the hospital with Colby alone, scared shitless, that's where. I'd be scared to ever leave the room. I barely leave the room now as it is with them there helping me to keep an eye on things. I know it has to be doubly hard on them because they have to watch their grandson and daughter upset, not wanting to be here, etc. Yeah, it's pretty much sucky any way you look at it.

Turns out the little girl in the room right next to us is SMA Type I also. Go figure, huh? They're from out of state so I haven't had a chance in the past to talk to the mom before. Her daughter is 10 years old. Actually I think she's well enough to move to the TCC Unit today. Awesome! Hope she's well enough to go home soon. They've been here a very long time, since the 1st week of August.

I had to laugh today. The fat, jolly priest is here at the hospital on Wednesdays and Thursdays. Today he's wearing his Tweety Bird suspenders. That's funny enough. But the really comical part is he keeps getting Colby's name wrong. He came last Wednesday to the room and gave Colby a blessing/prayer. Then when we were in Mass he looked my direction and said he hoped Charles got the tube out soon. Oh boy. Then today when he came to the room he asked how Clayton was feeling today!? Clayton, really?! I said, well COLBY is doing better I think. Let's collect bets on what name he gives Colby next week, want to? A friend of mine suggested Fr. Mike needs to lay off the sacramental wine hahahahahaha. Hey, around here you gotta find humor where you can.

That's the Wednesday scoop. Going to go find some lunch now. I mean, it's been a whole 2 hours since I ate something. Bye for now.

WAITING...WAITING...WAITING...

Our weekend was UNEVENTFUL and that is simply marvelous! Colby has continued to have no problems with his blood pressure, no fever. His secretions are thinning/decreasing and he's peeing a little more. All of these are good signs. So guess what word has been brought up at rounds the last couple of days. Yep, the "e" word. Actually the docs wanted to "e" today, but I said no. I want to give him 1 more day (at least) for the antibiotics to do their thing. So...we've pretty much been in a holding pattern, just hanging out, trying to decide if Colby is ready to try you-know-what again. Even saying that word makes me nauseous after Friday and after what he went through in '09.

We had lots of company over the weekend and we soooooo loved it! It helps the time go by much faster. THANK YOU Theresa and Kim for coming up Saturday and bringing goodies, necessities, etc. So far, the KFC has not been tampered with and it better stay that way dammit. THANK YOU Amy and Judy for coming up Sunday and bringing more goodies. I'm telling you, texting, Facebooking and blogging are keeping me sane right now (well, halfway anyways.) I know this is exactly where Colby needs to be, but it's a little difficult for me being away from my friends. So thanks everybody for keeping in touch. Really, it means a lot to me.

And, Dani is in the house! Dani is Colby's friend who lives in Lexington. She's here for a sleep study and neuro visit. Not in the PICU with us, thank goodness. Hopefully it'll be a short trip for them. They brought Colby the cutest Spongebob hat. He looks so freakin' adorable in it. And Dani has told me a couple new knock-knock jokes, so we'll have to get those programmed on Colby's eye gaze soon. You can never have too many knock-knocks you know. And they brought me more diet Big Red and some other goodies. Yeah, those Reese's cups have already been tagged as my lunch and supper.

So this is day 15 of this glorious hospital stay. I've realized a few things over the last couple of weeks:

• I'm not the only one in the world with a sick kid. You see it all here, both acute and chronic, and that helps put things in perspective. I'm so thankful Cincy Children's is as close as it is for us. If it wasn't for this hospital, I'm 101% sure Colby wouldn't still be around for us to spoil and love.


• You can tell the veteran parents from the rookie parents around here. The rookies walk around with that deer in the headlights look, like, "my kid has whaaaaaat?!" or "you're gonna do whaaaaaat to my child?!" I can pick them out easily. Been there, done that. We veterans move quickly through the corridors, don't flinch at alarms and know just about every nurse, RT and doc on the unit. We have more of the don't F with me and my kid's care, and this is how it's going to be Dr. DingyPants look about us lol.


• I know a lot about SMA. Reluctantly over the years I've learned about elemental nutrition, respiratory functions, physical therapy, neurology, etc. But I still have a lot more to learn. Other SMA parents have been so helpful. Thank goodness for their understanding and friendship.


• God gave men the physical strength in this world, and He gave the emotional/mental strength to the women. Especially the mamas.


• You know what makes the world go round? Not the alignment of the sun, earth, moon. Not love, compassion, knowledge. It's COFFEE. Gotta have it, gimme it when I need it and nobody will get hurt. :-)

That's it for now. Keep you posted on Colby as soon as I can. Hopefully we'll be blowing out of this joint in the next week. p.s. - And yes, I called and left a message today to reschedule my surgery. Doubtful we'll be home by the 13th and even if we are home, won't be ready for me to be heading off for slice-n-dice.

MORE SLOW AND STEADY

Surprise! I'm able to update tonight. My brother is here staying with us and he brought his laptop, so of course I wanted to send the latest Colby news. Today has been good, UNEVENTFUL as a matter of fact. Colby has had a great day. We've been able to wean down his oxygen quite a bit and I'm sure his RT will have him weaned to room air by tomorrow morning. Also turned down his settings a little on his bi-pap. Yeah, doesn't this all sound too familiar? We're doing the exact thing we did the 1st time getting him ready for extubation. But that's the drill so we'll do it. His fever is gone, his blood pressure has been stable, both pluses. His "spit sample" grew cultures that were resistant to the antibiotic he was on, so we've changed that. I think finally, after how many stinkin' cough treatments, his secretions are starting to lessen. They've been clear and thin for days but just tons of secretions, especially oral. I was thinking it was because he had a tube down his throat and of course that's some of it, but I'm now also thinking it was the infection brewing. His chest x-ray looked much better than after yesterday's extubation fiasco. So he's back on the right track. Hang in there Colby! You can do it! You've got tons of love, prayers and support on your side. Hang tough my sweet boy.

I've had a good day too. My poor mama was so tired this morning. She's going home for a couple of days and I know she needs it badly. She needs to see her hubbie, sleep in her own bed and get rested. Dad will be here in the morning. It's great having Tony here. Seems we never get to spend time together just bro and sis. We're watching the Oregon/LSU game. But I've got news for him, after this blogging is done, my butt's headed to bed. We had visitors today, love it love it. My friends Theresa and Kim came up. Awesomeness. Theresa and I hit the cafeteria while Mom was still here and had lunch. Then Kim brought up a movie and KFC. So help me, if I go down there tomorrow to that parent room and my chicken is gone, I will go room to room in this PICU and find the SOB who stole it. They will pay dearly! You don't F with Mama's food if you know what's good for you haha.

So that's the scoop. Looking forward to my visitors tomorrow too. I keep forgetting Monday is a holiday. Heck, I'm having a hard enough time realizing it's September. Long hospital stays tend to do that to a person. Night folks.

EPIC FAIL

Well, that sucked. Colby's extubation didn't go well at all today. Within 20 minutes or so we were reintubating. Once we pulled the tube, we tried a nasal mask, that didn't work. Tried a full face mask, that didn't work. Then before you know it, his color was not looking good. I looked at Tracy, our other fav RT, and we both said, this ain't good. Sure enough, Colby was in trouble. The only choice was reintubating. DAMMIT! Then it got really interesting. They had a horrible time getting the tube in. The resident doc tried twice, then the attending tried 4 times, no luck. I was starting to freak a little by this point as you can imagine. They had to call in Anesthesia to get in Colby's vent tube, which he did on the 1st try. Ahhh, finally. Jesus, Mary, and Joseph, can't anything, any 1 single thing, be easy for this kid? Apparently not.

So we're back at square one. Actually more like square zero. Colby's vent settings are even higher than when we got to the hospital last week. I'm just sick. Sick with worry, sick with disappointment, sick with fear, sick with exhaustion, sick with watching them bag Colby just to keep him breathing. My parents are a mess, too. Mom was crying in the bathroom, Dad had to just leave the unit for a bit. Right now I don't even have a plan and let's face it, I always have a plan. We're waiting for Colby to wake up, which may be a while because they had to give him double the sedation meds to get him intubated. His x-rays look horrible now, areas of collapse. That's common after having this kind of trauma. Nothing like 2 steps forward and 47 back.

We had a visitor today. Colby's friend Amber from school was nice enough to come up for the day. I told her beware, things could maybe get a little hairy. I was just hoping not this hairy! She handled it like a champ. I think she's had her share of illness/hospital experience throughout the years so she was a big help. THANKS AMBER, for being here for us and for not falling apart like a big bozo haha.

I'll update again on Monday, since we have to start this whole stupid process over again. Wish I had something witty, cute or positive to say, but right now I don't. Bye for now.

GETTING GEARED UP TO YANK OUT THAT TUBE

Thursday update (or at least I think it's Thursday): The docs didn't round on Colby today until about 10:00. This is a good sign, as it means Colby is not the sickest kid on the unit and doesn't require immediate attention. Like I said, we'll gladly take a back seat and be lower on the list. It means Colby is getting better :-) Our night last night was...our favorite word...UNEVENTFUL. No drops in oxygen, for the most part his blood pressure has stabilized, no thick secretions, Colby got some sleep, etc. So you know what that means, tomorrow we're planning to extubate and get this kiddo off the vent and onto bi-pap. I'm just trying not to have a panic attack between now and then. I honestly think we've gotten him as ready as we possibly can. So they'll turn off his feeds tonight and tomorrow after the docs round, we'll give it a go. Providing nothing else shows up on his chest x-ray and no more silly surprises haha. When I left to come down here to the library, Colby was taking a nap, which is great. Needs all the rest he can once that tube comes out. Continued support and prayers much appreciated. Give an extra shout out for Colby to the big guy tomorrow around 10 a.m.

Dad is here with me now. Mom is going home (Jeffersonville) and will be back tomorrow in time for extubation. I walked her out to the parking garage and told her she didn't have to rush back tomorrow, that Colby's time to extubate was a guesstimate and just do the best you can and get here when you get here. Yeah, I might as well have been talking to the license plate on the car. She said in that sweet mama voice, "I'll be here by 10 o'clock tomorrow morning" and no doubt she will be. Period, end of story, because Mama said so. She's a trip that one.

So I'll make this update short and sweet and wrap up for now. I haven't had much to eat today and that piece of pineapple upside down cake my sister in law sent is calling my name. I won't lie, I'm very anxious, nervous, apprehensive and downright scared about tomorrow. But I've learned so much this hospital visit and I truly think Colby is as ready as he can be to get off that vent. We'll see how it goes I suppose. I'll update when I can. Adios.