COULD WE JUST FAST FORWARD TO SATURDAY, PLEASE AND THANK YOU

It's 11:00 Thursday night. In 40 hours or so, we should be heading home to Louisville. Can't wait. Really, I just can't wait. Time is at a standstill it seems. Come on Saturday afternoon, come on already. Trying to stay busy. Not an easy task. Not much to do around a hospital except take care of Colby, sit, wait, eat, wait, watch TV, blog, wait. I just got back from taking a shower. I figured what the heck, I'd go ahead and take one today.

Yesterday there were a couple other SMA families here for outpatient appointments and I was able to meet up with them and say HI. I was so happy to finally meet a particularly sweet, sassy girl for the first time. She has beautiful eyes, gorgeous fingernails and wants to be a praying mantis for Halloween. I cracked up when I heard that. Like her mama said, not a cute glittery ladybug, a praying mantis. I just love independent thinkers! Also met up with another cutie pie who was here for a followup pulmonary appointment. I think I've finally met the only child on the planet more spoiled than Colby Michael! It was hot in the room, seeing that there were 5 of us crammed in there. So the grandma was moving the door open and closed to get cool air moving in. You should have seen the look on that stinker's face when she stopped. He was like, oh heck no Granny, get back to fanning. It was priceless!

Going to try and stay busy tomorrow. We will be particularly busy at 10:00 when our Trilogy is delivered and I get trained on it so we can take it home Saturday!! Score!! A company from Corbin, KY, is bringing it up here (thank you Beth P.) and I can't wait to try this bi-pap when we get home! Ambulance service is supposed to pick us up Saturday at 3:00ish, and they better not be late! The teacher who is going to do Colby's home hospital called. I need to call her back and set up times for Colby's schooling to start next week. Then there's this damn surgery issue to deal with. Thought I had it figured out, but now there are major scheduling conflicts and it's a total cluster you-know-what. I can't even deal with all that right now. I just want to concentrate on getting Colby home, sleeping for at least 2 days straight in our own beds, and taking it from there. Oh yeah, and I need to talk to my bosses and figure out when I'll be able to get back to work. Then they'll have to write letters to the nursing agency with my schedule in order to get a nurse to stay with Colby while I work. My stepdad is coming up tomorrow and we're sending a bunch of stuff home with him that we won't need anymore, so that'll take up some time too. Good grief, now it's only 11:20 on Thursday night. The next 1.5 days are going to be extremely, painfully slow and nerve wracking for me. Lord grant me patience, and hurry the heck up, please!

I did hear some sad news. Fr. Mike stopped by. You remember the fat, jolly, forgetful priest with the really cool suspenders (he was wearing heart ones yesterday.) He came to Colby's room, as he has done every Wednesday since our stay here, for a prayer/blessing. He said yesterday was his last day at Cincy Children's. He said because of costs/budgeting, the hospital couldn't afford to pay his mileage monthly, as he was driving a long ways on the 2 days he was here. So they're going to replace him with other local priests I suppose. What a huge loss for this hospital and the families who come here. He's a sweet old guy, always smiling, joking, and his homilies were quite short but had meaning. He brought a smile and comfort to us when he stopped by, even if he did forget my kid's name all the time. What a shame.

Okay, I'm going to try and go to sleep now, although this unit sucks for sleep. It's loud and there's way to much lighting. Some of the employees on the night shift need to use their indoor voices. In other words, shut the hell up, there are exhausted patients and parents around here trying to catch some zzzz's for crap's sake. Yeah, it'll be all I can do not to blow my top between now and Saturday at 3:00. Think I'll start with that dorky, snot nosed, pesky little rodent, sorry I mean resident, who doesn't know the first thing about SMA, or my kid. Seems he could use a good butt chewing. Morning rounds could get interesting :-)

CAN YOU SAY, WE'RE OUTTA HERE (well almost)

Some little boy is kickin butt in the TCC and his name is Colby Michael Russ! We got to the TCC on Tuesday afternoon. The transition was smooth. They brought the Trilogy down to the PICU, set Colby up on it, and away we went to the 6th floor. The Trilogy is the latest and greatest bi-pap machine that we SMA families are discovering, trialing, and hopefully getting for our kiddos. I know of 2 other local families that have one, and 1 other family trying to get one. And guess who's gonna be next on the list? Uh huh, Mr. Colby. The Trilogy can be used as a vent for a trached patient but also has a bi-pap mode. You can fine tune the settings much better than the bi-paps Colby current has for home use. Another great benefit is portability. It runs for several hours on its own battery! How great would it be to NOT carry around a 30-pound battery back to run the bi-pap? Super great. Plus the machine is very quiet. I had to lean over Colby a few times at the beginning of the Trilogy trial to make sure it was on. Yeah, if I could, I'd be sneaking that bad boy into my overnight bag for the ride home.

The TCC is very different from the PICU. You have to learn all new docs, nurses and RTs. They set up his feeding pump different (no big deal really but just another difference.) We don't have a shower in the room and the sleeping arrangements totally suck. We've put in for a sleep room the last 2 nights and didn't get one. The first night I took the foldout thingy and my poor mom slept on this tiny cushioned bench. Good thing she's petite! Last night I slept in bed with Colby (which was much easier when he was about a foot shorter) and Dad got the pullout thingy.

So here's the news we've been waiting for: DISCHARGE PLANS!! I'm working with the discharge nurse to get us home on Saturday. Yippee. Goodie. Thank God. Can't wait. Prayers answered. Cool beans. Giddy up. And we're outta here. Colby has gradually been increasing his windows (time off his bi-pap) over the last couple days. His 1st break was 5 minutes, haha, while we were still on the PICU. An RT and I snuck that one in. Then he windowed 15 minutes, then 20, 30, etc., gradually increasing each time. This morning he took a 1-hour break off his bi-pap. Great job Colby. His oxygen level stayed fine. Heart rate was a bit elevated but overall he did great. After his 6:00 cough treatment tonight, we're going for another 1-hour window.

We're also almost at home settings. Currently he is at 22/7 with a rate of 20. All we have to do is go to 21/7 and he will be at home settings. Like I've already said, it doesn't bother me to take him home on 22/7. But for some reason, they are hell bent on Colby being at those settings. The TCC resident, attending and I have had "discussions" on issues for Colby. You can guess which ones, when to change his bi-pap settings, what his CO2 levels should be, etc. Same shit, different day. The attending tried to tell me "their" plan for Colby. Then I told him the real plan, MY plan, for Colby, which has been followed so I won't gripe too much. Although I will say after having "discussions" with the little punk resident, I need a t-shirt that reads: I eat residents for breakfast.

Colby is trying a new mask. Nasal prongs actually instead of a mask. They're pretty cool and he is tolerating them well. This way he can wear his glasses and won't have skin breakdown around his nose. Our RTs over the last couple of days have been great. They've worked really hard to understand what my goals are for Colby and make Colby as comfortable as possible.

Okay, this update is getting rather long so I'll wrap it up for now. Just had to share the good news that COLBY IS IMPROVING. WE'LL BE HOME SOON. MY KID ROCKS. Bye for now everyone. THANK YOU for your continued prayers and support. Much, much appreciated.

CLARIFICATION

Please don't get me wrong. I know I've had various complaints about certain docs or certain aspects of Colby's treatment plan during this hospital stay, but overall, I LOVE THIS HOSPITAL. I think when you deal with a diagnosis as complicated as SMA, you'll always have different opinions on how things should be handled. SMA is tricky (and super sucky) because it affects each child so differently. You know the expression, "same thing, only different"? That's SMA.

Cincinnati Children's is one of the top 10 hospitals in the country, maybe in the top 5. After seeing how simple things get easily fouled up at "another local hospital" I can see that Cincy is a bar above the rest. I'm extremely thankful Cincy Children's is no more than a 2-hour drive. The docs here know more about SMA than docs at other hospitals that's for sure, and I'm most appreciative of that knowledge. They have saved Colby's life on more than 1 occasion. I have no doubt that if we stayed at "another local hospital", he would have been dead years ago. That's not being harsh, that's telling the truth. Many, many hospitals around the country are simply SMA ignorant, which is a shame. So many SMA kiddos pass away because the parents depend on docs who have no experience treating SMA patients. They treat and wean not much differently than their other patients. THIS IS WRONG, VERY WRONG!! Look at the SMA kiddos here in the tri-state area. Not only are we beating the "you're child won't live past 2" landmark, our kiddos are thriving and if you ask me, have a high quality of life. I think it's only fair to contribute a great deal of that success to the expertise and experience with the staff here at Cincy. That and the fact that there are some serious kickass SMA parents in Indiana, Ohio and Kentucky!! So proud to be a part of that elite group!!

Were mistakes made in the last 36 days? Of course. Doctors made mistakes and I made mistakes with Colby's care plan. I've had to learn a lot this hospital stay. I know more about PIP, PEEP, CO2, BUN and TPN that I ever cared to know. But ignorance doesn't fly with an SMA diagnosis so now I know and will do better next time (which will be a very, very, very long time, right)?

We've become very close to some of the staff on the PICU. Their kindness, concern, professionalism and humor helped us make it through a very difficult time. How do you thank someone enough times for saving your child's life? How do you tell them thank you for smiling, talking to us, helping us get what we needed for Colby and for our personal comfort? How do you thank a team for listening to your concerns, compromising and in the end working with you for a plan that is best for the patient, my sweet Colby boy? You can't. I couldn't write enough thank you notes or send enough cookies to the PICU staff to express how extremely thankful I am that they were here for Colby and my family. THANK YOU, CINCINNATI CHILDREN'S HOSPITAL PICU STAFF, for getting us to this point. Can't wait to get home and get on with our lives :-)

STICK A FORK IN ME, I'M DONE

There's much good news to be shared, so allow me to do so. Colby is doing fantabulous with the pressure and rate changes we've made to his bi-pap. Today we moved his pressures to 23/7. Yesterday we moved his rate to 20. Home settings are 21/7 with a rate of 20, so he's really close. It's scheduled for us to go up to the TCC. I think that stands for Transitional Care Center. In my humble opinion it should be called TCU, Transitional Care Unit. That way you would have ICU and TCU, but obviously nobody asked me. Anyways, this is a big step up for Colby. It says he doesn't need the close supervision and equipment (vent) like he did in the PICU. I'm not fond of the TCU, we've had issues there in years past. But I'm ready for the change b/c it means we're 1 step closer to getting home. I already sent home 2 bags of stuff we weren't using back with Colby's dad when he visited yesterday. This morning Mom and I sorted through 3 big bags of snacks, yes, 3 bags, and I had her take some of it to her trunk.

There are ways of telling your kid is getting better in the PICU. They will start to DC (discontinue) things right and left. Colby is no longer getting daily lung x-rays, he's only getting blood gases once a day now, it doesn't take near as long to discuss his plan in morning rounds, etc. I decided to reduce his cough treatments from every 3 hours around the clock to every 4. However, he's still on all 3 antibiotics. I think day 9 of 14 for the 2 and day 4 or 10 for the other. Here's another hint. The nurses here in the PICU get no more than 2 patients on a shift. They will pair your child (not very sick) with another very sick child, usually 1 just getting admitted or 1 coming out of surgery. That way they can spend more time with the sicky. Basically it means Colby kinda gets the shaft. But that's ok. There was a time when my kid was 1 of the sickest and he needed all the nursing attention he could get. We don't mind helping more, making sure he's changed, rotating him to prevent soreness and bed sores, doing his cough treatments, etc. Anything that will keep him on schedule and get us out of here, I'm all for it. Years ago I used to do everything for Colby while he was in the hospital, change him, turn him, do his treatments, etc. But I've learned over the years to get the help here while I can because once we get home, it's a whole other story.

Colby is now the very proud owner of an iPad-2! Yeah baby. I don't know even exactly know it's capabilities, but I do know many SMA kiddos have one and the families absolutely love it. Don't know exactly how he got it either lol. There's an SMA mommy out there, let's just call her the iPad Queen, who helped facilitate us getting it. I was totally shocked when we opened it. Surprise, surprise, it's an iPad. Well alrighty then! For now it's locked away in Mom's trunk, too, because I hear it takes a while to get it hooked up and going. I obviously don't have the patience or brain power to handle that right now. Power chair, communication device, iPad. Colby is quite the high tech red neck these days.

Above is the good news. My gripey news is below so if you stop reading now, don't blame you. Last night, after they put Curtis Painter in as Colts QB, I just went to bed, couldn't handle it. Got a sleep room so Mom stayed here in Colby's room. I came back down about 7:00 this morning and guess what Mom tells me? They came in here at midnight and tried to switch Colby's settings down, AGAIN. Sneaky little shits. Without consulting me, without my knowledge, just poof, change his settings. But good ole Mama Linda was on top her game. She said absolutely not. What is your justification for doing so, is his blood gas off? They said no. She said don't you dare move those settings until I call Amy down here. Then they changed their mind and left them alone until we discussed it in morning rounds. WHAT THE HELL?! Why would they do that?! You know how many times I've gone on and on about them changing his pressure setting before it's time. Plus this is the 3rd time we've "caught" night shift trying to make decisions without consulting me first. It's ridiculous. I thought about raising a huge stink, then I thought we're leaving this unit tomorrow, so just forget it. Overall I've been very pleased with the care Colby has received so why leave on a bad note. Just want to get us HOME. SOON. I'm thinking Saturday or Sunday. Keep you posted.

GREETINGS FELLOW BLOG READERS

How has your Saturday been? Ours has been...wait for it...UNEVENTFUL! That's our favorite word. Colby has made FORWARD PROGRESS, our favorite phrase. We were able to adjust his settings today from 28/8 to 24/8. First we did 26/8. Yes, I said I would only allow for 1 setting adjustment today. We talked about it in afternoon rounds. I told them to take another blood gas and if his CO2 was too low, I would consider it. So they did and guess what, his CO2 was very low, like 28. Colby is kicking some bi-pap ass and it was time to move his settings down even more. I think tomorrow we'll work on adjusting his rate. I'd like to leave his pressure setting alone for a while. He's over there just sawing logs. Oxygen 100, heart rate 61, lol. It doesn't get much better than that. We got a sleep room tonight so I'll send Dad down there. We're currently watching the LSU/West Virginia game. We have the same RT for the 3rd night now, so I won't have to be getting up with Colby as much to help with treatments. Sleep is good.

The goal tentatively is to go to TCC on Tuesday. Colby is definitely not ready for windowing yet. We had his bi-pap mask off just long enough today to wash his face and change out the protective strips that prevent skin breakdown from wearing the bi-pap so much. His oxygen dropped to 88, bummer. All in good time. I'm still extremely pleased with this "e." It has gone better than any "e" he's ever had.

Are we home yet?! Are we there yet?! It won't be long now, hallelujah!!

LOVE SHARING GOOD NEWS!

Colby has had an excellent day. No desats, no changes in levels/numbers that have us concerned, no problems whatsoever. At rounds tomorrow we'll talk about adjusting Colby's settings some. Notice I said SOME. We're not going to move the pressures and the rate both at once. We can do 1 or the other, then give Colby 24 and make sure he's okay, then do the other. Period, end of story, we're doing it Mama's way. Like I said, even though he's doing awesomely awesome, no way I'm rushing things. He's over there jabbering away watching a DVD. He definitely needs to sleep tonight. What is it with this kid and not sleeping! Oh yeah, he's in a strange place with strangers caring for him. I get it. He's not due for a cough treatment until 11:30, but we're going to have lights out as soon as I get this update done. I'm sure he'll fall asleep then it will be tmt time. Dangit, poor bubba.

Things I've learned lately:
1. What the word "copious" means (excessive, in abundance, as in Colby's secretions until a couple days ago.)
2. The 4-letter word I really hate right now: plug, as in Colby plugged, his air was cut off and here we are still in the hospital. My favorite 4-letter word right now: home, even if it is just a dumpy, cluttered apartment. Can't wait to get there.
3. I get by with a little help from my friends.
4. They should put a bar somewhere in this hospital. Forget free pizzas on Wednesdays, pass out vodka instead please.
5. I have the most loving, concerned, supportive, bestest parents on the planet.
6. I like French onion soup. It does not like me. Bleh.
7. Spongebob Squarepants has healing powers. Or at least in my kid's world he does.
8. Prayers get heard, and answered.
9. I'm ready to enjoy the cooler upcoming fall weather. If anyone wants to have a bonfire/marshmallow roast and invite Colby and me, feel free.
10. Colby's body may be weak, but his will is strong. He is the most tolerant, sweet, beautiful boy I know. MY KID IS A ROCK STAR!!

MY NEW FAVORITE WORD...PROGRESS!!

I think we'll be home soon. Yep, I said it! Colby is doing amazingly well. I think he just needed some extra time/antibiotics before coming off the vent. All those numbers and levels we look at have remained stable, so it hasn't been any problem convincing the docs to leave his setting alone for a while. We do have Colby weaned down to room air oxygen on his bi-pap, but other than that, no changes for now. No need.

Colby is wearing his bi-pap 24/7. The only time we take it off is to give him cough treatments, and even then we place it back on his nose between cycles. Not taking any chances! He's using his mask from home, a nasal mask. So we've had to use a chin strap with it in order to help keep him mouth closed to prevent pressure leakage. I know he doesn't like it, who would? He also can't wear his glasses while wearing the bi-pap. But I talked to Colby and I'm sure he understands these are small sacrifices to having that flippin' tube out of his throat. His jabbering is so sweet to hear, cracking all the nurses and RTs up b/c they haven't heard him until now. He's on his home feeds now, done with the TPN. Yeah, my kid is a total butt-kicking rock star.

The plan from here? In rounds this morning I heard words like "move down to TCC" (transitional care unit) and "home maybe next week." Probably starting tomorrow we'll start to wean his pressure settings just a little. Then after a day or 2 of that, start windowing (taking small breaks off the bi-pap.) I'm very picky about windowing, imagine that, and he'll start out very, very slow. No way am I pushing him to spend time off that bi-pap. All in good time and I'll do everything I can to make sure his progress is nothing but forward, no sliding back after he's come this far.

That's it for now. Pretty darn good, eh? Dad is on his way here and Mom will go home for a day or 2. I'm not going to lie, I'm very tired. Whatever the adjective is that comes after tired, grumpy and exhausted, that's me. I knew once he came off the vent, that would be my time to totally kick into Super Mama status. I need to watch that everything is being done correctly, at the right times, and also watch Colby's overall behavior. Yeah, you thought I was particular before, you should see me now. I bet they can't wait to get us out of this PICU! Actually I think the staff here really likes SMA parents simply b/c we're knowledgeable for the most part on what's going on with our kiddos. We know the lingo and understand how it all relates. Never wish I had to be so damn smart about this crap, know what I mean Vern? Later, taters.

SMILEY FACE, 2 THUMBS UP, HAPPY DANCE

I'll admit, this "e" is going better than I thought it would for Colby. It's been 32.5 hours and not the first little bobble. So woot woot, way to go sweet boy! He's on the same settings as when we pulled the tube. Fine with me. The main thing is we haven't had to go up on his settings. His oxygen, heart rate, pH and CO2 levels have remained stable so no need to make any pressure changes on the bi-pap. (Remember my if it ain't broke don't fix it attitude.) We have weaned his oxygen on the bi-pap to 30% and I hope to have him down to room air (21%) by morning. This shouldn't be a problem for Colby, usually never is. He's currently getting his cough treatments every 2.5 hours. His next one is due at 8:30 and after that I think we'll try to go every 3 hours overnight and tomorrow. He's going to remain on his broad spectrum antibiotics until we go home. Haven't really decided about the other 2. I would say he needs at least a 10-14 day course of each. His TPN is done and he's on his normal feeds now. It's all progress, progress, progress.

Colby has had a busy day, sort of. He got a bath this morning and we changed his bedding. We didn't mess with washing his hair, though, since he has on his bi-pap cap. The holistic therapist came and gave Colby a message. Yeah, he soaked it up like the little attention seeker he is haha. Hilarious. His heart rate was in the 80s and he was just jabbering away. Occupational therapy came and stretched him out from the waist up. Our family friend, Caryn, stopped by on her way to see her daughter.

I guess that's it for now. I'm so glad to be blogging happy news from Cincy. THANK YOU, THANK YOU, to all who have stuck by us during this mess. Your love, support and prayers are felt all the way up I-71. Right back at ya, peeps :-)

WONDERFUL WEDNESDAY

Colby is 12 hours, 42 minutes after extubation, not that I'm counting. Today has gone "textbook" I guess they would say, without a problem, a hitch, a worry or an "incident." Here are the stats: Colby's home bi-pap pressures are 21/7 with a backup rate of 20, on room air oxygen (21%.) We extubated him on 28/8 with a backup rate of 22, bleeding oxygen at 50% through the bi-pap. We've taken 3 blood gases; they all look great. Actually his CO2 is a little low, 29, and I can't believe they haven't said something to me about changing something on the vent. Like I'd agree to it anyway. Only thing we've changed is gradually taking the amount of oxygen that we bleed through his bi-pap down. It's currently on 30%. That's it, read my lips, NO OTHER CHANGES. So help me, if they come in here trying to change these settings I will beat someone senseless. Oh wait, touching his vent settings this early after "e" would already make them senseless, so maybe I could beat some sense into them instead. He'll get another blood gas at 4 a.m. and we'll reevaluate from there.

Our RT today, Tracy, is a freakin' rock star!! She did an amazing job with Colby. We had every little detail down and were ready to roll when "e" rolled around. She monitored Colby closely and he was never even a few minutes late for his treatments. She took EXCELLENT care of him today. I'm really glad. She's the 1 who extubated Colby the day it only last 20 minutes, so this was definitely a better day in the Colby/Tracy "e" storyline.

Colby looks good. He acts more like the Colby I'm used to seeing. His oxygen has not dropped below 98% and his heart rate hasn't been over 110. Most excellent! Something I learned (the hard way) from the last "e" is cough, cough, cough. We didn't give Colby enough cough treatments last time, but by golly, we're on top our game this time around. We started out doing tmts every hour for the first 3 hours, then moved to every 1.5 hours, etc. He finished his last cough tmt at 11:15 and Penny, another 1 of our fav RTs, will come back at 1:30/1:45 for his next tmt. We're also doing MetaNeb tmts every other along with the cough assist.

Like I've said before, Colby is not in the clear just yet. The first 48 hours are usually the most crucial for SMA kiddos after "e." However, I'm very, very pleased with his progress so far. This is one of the smoothest "e" experiences we've had to date. I hope to keep reporting good news/progression tomorrow.

QUICK WEDNESDAY UPDATE

Colby is 4 hours, 45 minutes post extubation. He's a freaking rock star! No problems as of yet. No drops in oxygen, heart rate perfectly stable. CO2 levels great. He's not uncomfortable or belly breathing. He is tolerating his cough treatments well. He still has a loooooong way to go but so far we're very pleased. And yes, I can hear those faint little sounds he's making and it warms my heart to the nth degree. Hang in there, Colby. Just keep on keeping on. I'll post more good news tonight!!

IT'S ALMOST TIME - OH MY

In about 12 hours Colby will be extubated from that stinking vent for the 3rd time this hospital stay. I'll be able to look at his handsome, sweet face with no tape or tube. Within an hour of coming off the vent, he'll start jabbering again. Even though they'll be hoarse and weak, I can't wait to hear those Colby jabbers. That's the part I'm looking forward to tomorrow. You already know what I'm not looking forward to, another failed extubation. I just don't think I can watch him go through that again. Watching your kid struggle just to breathe is horrible. I'm scared, really, really scared of what might happen. Do I think he's ready? For the most part, yeah. I'm never fully sure just based on his past experiences at failed extubations. They are not pretty. However, we've identified his infections and are covering them with 3 different antibiotics. His secretions are more under control right now than they have been this whole stay. We have to try some time, so I say let's do this. I'm terrified for him. Absolutely petrified what will happen tomorrow. Colby will never know that, though. He already knows we're doing this. Tomorrow I'll just smile through the fear and encourage him to do his best. That's all we can ever ask of anyone, please just try your hardest. Did I mention I'm scared shitless? I want him off the vent so bad I can't stand it. I want him to breathe on his own again. Most of all, I want us to all GO HOME and get on with our lives.

SMA, you mean, horrible bastard, you've taken away yet another month of our lives. You've robbed my son of his 4th grade year. He got in a whopping 2 days of school before being hospitalized. You've taken my parents away from their homes, their relationships. Their lives have been put on hold, too, big time. You've prevented me from working. I've had to reschedule my thyroid surgery yet again. I miss my friends terribly. We've missed beautiful fall weather after having a miserably hot summer. We won't even begin to explain the emotional toll you've taken on all of us. I HATE YOU, SMA. I hate what you've done to Colby. I hate what you've done to my family. Colby just has to pull through this extubation because we will NOT let you win. We WILL get Colby home and we WILL move on with our lives.

I guess you can tell I'm a little on the emotional side at the moment. Cant' help it. I have my Extubation List printed out neatly, pinned up on the message board. One of our fav RT's will be taking care of Colby tomorrow. Colby's TPN will start at midnight. Not sure what else I can do to help him succeed tomorrow. It's gonna be what it's gonna be. Hey, guess what, there's a patron saint of lung and respiratory problems. Ha, can you believe it? St. Bernidino. Guess I'll be raising up a couple prayers to him, along with the Big Guy, tonight. I'll post tomorrow as soon as I get a chance. Thanks everyone for your continued support. Means a lot, it really does.

12:46 P.M. - STILL BORED, PLUS SLIGHTLY CRAZY

I have so much nervous energy today I can scarcely stand it. So far today I've also met with the docs for rounds, cleaned out my overnight bag, washed the sliding doors leading into Colby's room, sent probably close to 50 texts, helped give Colby a bath and change his sheets/blankets/pads, put in a load of my laundry, hung up my clean clothes and now I'm down in the parent room eating lunch and blogging, again, just to keep my mind of "E." So you all will just have to bear with me.

Today I learned in rounds Mr. C is growing another type of infection, staph. Yes, I could have screamed. So they've started vanc to treat that for a total of 3 antibiotics. This is exactly the danger you risk leaving someone on a vent for so long. But what choice did we have? He wasn't ready for "E" and you can't set him up to fail for crap's sake. Everyone is asking me do I think he's ready now. The answer is I'm pretty sure but I don't have a crystal ball, so I don't really know! Hard to tell. I do know that his secretions are much thinner and manageable and that he is "clearing" after cough treatments and staying pretty clear between treatments. And now since we've identified all infections growing (hopefully) and are treating them with the proper antibiotics, I believe this is our window of opportunity and the BEST chance for Colby to succeed at "E." I've already talked to the RT I want for tomorrow, she's on board. We already have a V60 bi-pap reserved for him. They've ordered his TPN to begin when he goes n.p.o. tonight. So we're getting things in place. I think my main responsibility for today is to stay calm around Colby (easier said than done), give him lots of lovin', and try to get him to nap and get rested.

I'm not trying to be mean, but there is a lady who really stinks here in the parent room. It's not from b.o., quite the opposite. She's always clean, neatly dressed, looks very nice. It's the perfume or hair product she's wearing. It's just awful! Smells like baby powder on crack or something, very overwhelming, even from 3 tables away. Think it's time for me to get back to Colby's room. More rambling later. Send me some calm, soothing vibes if you can. Obviously I need them.

8:18 A.M. AND I'M ALREADY BORED OUT OF MY MIND

I got 6 whole hours of uninterrupted sleep last night. Did you hear my words, 6 hours!! My poor mama, not so much. She won't go to sleep if Colby is awake, even if he's doing perfectly fine with no vent/oxygen/heart rate problems, God love her. Apparently Colby has managed to get his days and nights mixed up, which is common for kids to do in the hospital, and he slept a whole 45 minutes last night the crazy little stinker! So she's down in the sleep room now getting some sleep and Colby is snoozing away, too. Good, they both need it.

Got up at 6:15 and took my shower, as I do just about every morning. I try to get up, shower, do hair and makeup and have coffee before morning rounds. Yes, I put on makeup while we're here in this hospital. Why? Not really sure. Why not? I spend anywhere from 22.5 to 23 out of 24 hours a day in this room (that's no exaggeration.) I figure the least I can do is spend 3 minutes slopping on some lip gloss and eye liner. I've got it down to a science. They come in for Colby's daily chest x-ray anytime between 5:30 and 7:00 a.m. Shift change is at 7:00 so the nurses and RTs are out getting their reports from the night shift. Gives me just enough time to get ready for the day. And who knows, my Mr. Dr. Prince Charming may come strolling up to the PICU, although it certainly hasn't happened yet. I picture him around 6'3", brown hair, killer blue eyes. He understands SMA to the fullest extent and is currently working on a cure. Should be done by Christmas he tells me through perfectly straight and white teeth. And in his spare time from saving puppies from puppy mills and feeding the less fortunate, he is an avid Harley rider who has invented a tilt-and-space side car for Colby with a bi-pap machine built into a helmet. Hey, it could happen. Girl's gotta be prepared you know.

Okay, now there are 2 nurses, an RT and a student in here so looks like our day is starting. More later. And oh by the way, we're probably gonna try to "E" tomorrow. Third time is a charm I'm hearing!!

HERE'S THE SCOOP, PLAIN AND SIMPLE

Okay, trying to think of something cute or witty for this update. I got nothin'. Sorry, my brain is too fried today. So how did our Monday go? So-so I guess. We found out Colby is indeed growing the Gram-negative rods again. The same infection he had previously, so we've restarted the 2 antibiotics he was on last week, gentamicin and meropenem. We started these yesterday so now we're on day 2. Blah blah, you've heard this before huh? So now we're just trying to figure out when to "e" again. This is not my favorite topic to discuss/think about, but I'm so tired of seeing my sweet boy with that tube down his throat and tape across his face. Plus I miss his jabber-jabbers so much (you're not able to speak if you're on a vent in case you haven't had any experience with this stuff.) Right now it's just a case of when I think he's ready. My only concern right now is his secretions. His lungs are sounding pretty darn good and are clearing after his cough treatments, for the most part. He still has a ton of oral secretions, and I do mean a ton. We keep him suctioned constantly and it just seems you could leave a catheter in there and suction all dang day. I'm sure "e" will come up in rounds tomorrow so I best get to deciding what I think should be done for Colby. We'll try some time this week, just haven't pinned down exactly when yet. He did take a much-needed 2-hour nap today. Thank goodness. Gotta get rested for the upcoming "e." Barf, really makes me sick to think about it.

I found myself a bit bipolar today. Early in the day I was thinking okay, we can do this. We're just gonna be here as long as it takes. We'll do whatever it takes and it's totally up to Colby's lungs. Three hours later I was thinking, screw this, I hate this, I'm gonna lose my mind, I want to punch somebody, I'm going to punch somebody. Then a few hours later I was thinking, oh crap I don't even have the energy to punch somebody or yell at anybody so we'll just go back to the level-headed this is going to take as long as it takes attitude. Whatev!

Colby is still doing cough treatments every 3 hours around the clock. His next one is due at 11:30. I really, really, really, really hope he goes to sleep after that one. He needs all the strength/rest he can get in the next couple days. We have a sleep room tonight so I'm off to catch some zzzz's. Mom is on Colby duty. I wish her luck, our nurse seems a bit on the dingy side. Maybe I'm just grumpy. More tomorrow.

WILL WE EVER GET HOME?!?!?!

Hey, guess where we are?! Still stuck in this flippin' hospital, that's where. I didn't update the last couple days because quite frankly, I didn't feel like it. Seems like things around here are just a constant stream of ups and downs. CO2 too high, CO2 too low. Tweak pressures accordingly. Ready to extubate, that didn't work, re-intubate. Stop feeds to extubate, restart feeds when re-intubated. Colby wasn't having BM so doubled his MiraLax dose. Then he restarted antibiotics and now has diarrhea. Just didn't feel like getting into all that lately. Saturday was my meltdown day, and I do mean meltdown. Right after morning rounds when they told me Colby's culture was growing something, I lost it. Friday I was high as a kite thinking Colby was ready for extubation. I said let's do it Sunday instead of Monday. Then Friday afternoon/evening Colby had 3 destat episodes. That's not good, really not good. We took a respiratory culture sample and sure enough, Colby has another infection starting. Luckily we caught this before we decided to extubate. All we know right now is that the culture is growing Gram-negative rods. I have a sneaking suspicion he has the same infection he had 2 weeks ago, that it has recolonized. Lovely, perfect, suburb, fan-flippin-tastic. This means start antibiotics, AGAIN, and give Colby more time, AGAIN, before he is ready to extubate. His secretions had started to thicken and turn a little yellowish, but the antibiotic has improved that. His secretions are definitely thinner. Wish I had a dollar for every time I suctioned tons of slobber out of his mouth today. Buckets of it! Plus his lungs sound better today than they did yesterday. He is even "clearing" meaning his lungs have good sounds in all lobes, no scratchy, coarse sounds of junk swimming around. Once the culture defines exactly what funk Colby has growing and we decide whether or not he is on the correct antibiotic, I'll get a feel for a more exact "E" date. I have my list all ready to go. Just gotta wait for Colby's lungs to get on board. He's still the same silly Colby. Not wanting to sleep, afraid he'll miss something. I can't believe he doesn't try to sleep more. The last good night's sleep he had was sometime in August for crap's sake! Rolling his eyes at the nurses and RTs when they say something to him he doesn't like. My sweet, silly boy!

So today is my birthday and I'm kinda thinking big woop-dee-doo. I've also had a lot of up and down emotions today. Bummed of course that Colby is still in this hospital, enough already, we want to go home! We lost a family member today after a long, courageous battle with cancer. I was very sad to hear the news. This is NOT how I would have planned to spend my 38th birthday :-) yeah, I know, just let me have that fantasy for a moment. But those that love and care about me tried very hard to make my day special and you can't ask for much more than that. My mama went down to the cafeteria, bought me a Hostess cupcake, stuck a candle in it and sang Happy Birthday to me. Very sweet. My bro, sis-in-law and nephew stopped by for a visit and brought me a beautiful necklace. Joni and her mom brought me Pizza King yesterday and you know I loves me some of that! Amy got me a new sweat outfit to have while hanging out here. Dad and Sam got me a very pretty new rosary, cupcakes and Sam made me a broccoli casserole. The emergency chocolate my stepdad got me was much appreciated, too. (the common gift for me being food, imagine that!) Being surrounded by those who love you so much make this place, and this not so ideal birthday, bearable. However, when I get home, I think a little get-together, late birthday celebrating might be in order.

Colby is getting 1 of his antibiotics now. Then he'll get his MetaNeb and his cough treatment, and maybe, just maybe, he'll go to sleep. We've had the same nurse and RT for 3 nights in a row. They work well together and they take very good care of him. So I'll be able to rest tonight, too. Always a bonus.

And I'm totally pissed the Colts lost. Kerry Collins stinks.

Future updates to follow as soon as I know anything different. This kiddo is getting better, just been oh so slow and a bit unsteady. Sure does make me appreciate the non-hospital days that much more. Bye for now.

THURSDAY'S THOUGHTS

Okay, enough of the vent pressures, CO2 levels, discussions with docs and SMA talk. I'm glad to report that Colby has had a very stable day. His lungs are sounding more clear. I've had a lot of discussion with the attending about my "E" plan for Colby, trying to get as much as possible in line for the next time. We get a new attending tomorrow, which makes me nervous, but I'm willing to give her a shot. As long as she does everything my way, haha. No, seriously, we're doing it my way next time. I already have my list of demands, I mean requirements, ready for the next "E" which will be soon, Monday, maybe Sunday. Makes me ill just to think about it. Third time is a charm, right?

Here are some things I've heard during this hospital stay:

from attending dr, "You're a minimalist. I like that," referring to my if it ain't broke don't fix it approach to Colby's SMA care. Hey, it's worked so far.

from a resident dr this morning during rounds, "You look tired. You should have your coffee." Little did she know I'd already drank 2 cups.

from the hospital priest, "How is Clayton doing today?" Really, come on now. But I will give him credit, week 3 he nailed Colby's name right on the head.

from another SMA mom, "Don't can't let some snot nosed resident tell you what is best for your child." Point taken. I thought I was ballsey but wow, she makes me look like a wallflower.

from many family and friends, "We miss you all. We love you all. We're praying for you all. We want you all to come home soon." Thank you very much. Trust me, we can't get out of here soon enough.

Okay, that's about the long and short of it. I could go into some blah blah about Colby's BUN level being slightly elevated, but it's not a worry right now so I won't get into it. Colby looks so precious over there in his bed. We got him all cleaned up tonight and that little pea head of his is sticking out with that nasty tape all over his sweet face, but still as adorable as ever.

G'nite folks. Time for this mama and her mama to hit the hay. More exciting hospital news tomorrow.

DARE I SAY PROGRESS?!

I got a sleep room last night. I get a call from Mom at 5:15 a.m., "Amy, this isn't an emergency, Colby's fine, but you need to come down to his room right away." I already knew what it was going to be about. So Colby's CO2 was slightly low. This is a good thing. As you know, the problem has been his CO2 has been too high. When it's lower, it's a sign he's breathing better on his own. Okay, that's great, wonderful. Glad to hear it. But I'll be damned if they didn't change Colby's vent settings without telling us, they just freakin' did it. What part of "no one is to touch these vent settings unless they've talked it over with Amy first" do these people just not get?! Not only did they turn down his settings, they CRANKED them down from 24/7 to 21/7. Another big no-no, as I've said I know at least 25 times over the last 3 weeks, we need to slowly wean Colby's settings. Oh my Lord I could've killed somebody. I kept my cool for the most part. The last thing I want to do is make a stressful situation even worse. But I did tell the nurse, you find me the doctor who ordered this and get them down here, NOW. So I told them to put the settings back to where they were and that we would talk about it in rounds. I also stressed no vent changes were to be made until Colby's pulmonologist approved. But it's all groovy now. Colby's attending doc this week is one of my all time fav docs. She's very easy to talk to and she agreed the settings shouldn't have been bothered. She stopped by a couple times through the day just to make sure I was okay with Colby's care and that I wasn't threatening to snap off somebody's head and shit right down their neck. We did adjust Colby's settings to 23/7 and at 4 p.m. they took another CO2 level and it was within normal range (well, normal for Colby.) So everybody got what they wanted after all, we just had to have a little drama before it happened.

I also heard the most beautiful 3 words from Colby's RT today, "Colby sounds clear." Ahhh, sweet music to my ears. And she was 100% correct, I listened to his lungs and they sound much better than a few days ago. Another good sign because I don't know if I've had an RT tell me that this entire admission. Another sign I think Colby is doing better. The cultures from Colby's bronchoscopy were all negative so Colby's antibiotics are now discontinued. They restarted the same ones he was on last week after he failed "E" just to be certain the original infection was gone, which it is. Anxious to see what tomorrow brings, hopefully more clear lungs.

I had the most wonderful visit from 2 SMA mom friends, Danielle and Susie. They live nearby and were nice enough to take time away from taking care of their own SMA kids to come see us. Not only that, they brought us supper, homemade supper of lasagna, salad and brownies. I mean really, how sweet is that? So good to see them. We keep saying we're going to get some of us SMA mommies together for an event away from a hospital or a fundraiser. Just get together for dinner or shopping or something non-SMAish like that. Their visit really brightened my day.

Guess I better lie down. I've got a whole 45 minutes before the RT will be in to do Colby's cough treatment. I'm hoping to report more progress to morrow. Nitey nite.

WE WANT TO GO HOME - 21 DAYS OF THIS B.S. IS QUITE ENOUGH

I'm so tired I can't even hardly think straight. I've been wracking my brains trying to figure out what we can do different the next time we "E." You know I love this hospital and most everyone in the PICU is fabulous. But I've picked up on a couple things that tell me some of them know a lot more about SMA than others. And no, I won't name names lol. I've decided the next time we try this scary "E" stuff, I'll be calling all the shots. It's not going to be any of this well this doc said this so maybe we should try that, and there sure won't be docs trying to talk me out of something that I think would benefit Colby's recovery. So I'm collecting all my info. Talking to the attending docs who have been around a while and to the RT's who have lots of SMA experience. Talking to other SMA fams who have had successful "E's" here at Cincy Children's. Looking at what has worked for Colby in the past. Putting this altogether and revising my "Colby's Extubation List." And this time around it will be done when I say according to the protocol that I line out for Colby. I'll take 100% of the responsibility for the outcome. Hell, like I don't do that now with the decisions I make for Colby. So, that's the new plan, Mama's Plan. I'm just sick of hearing well maybe he just needs more time. Bullshit. He needs changes. You do the same damn thing all the time, you get the same damn results. I won't be asking for anything major like hold Colby up by his ankles and let the secretions drain out that way. I think some subtle changes will make a world of difference. Gonna get interesting around here in the very near future. As you can tell by my tone, I think we're all just about done with this hospital crap.

Colby has had a good day. Very stable on the vent. We have his oxygen weaned down to room air. His pressures are weaned as far as they're going to be weaned for a couple days. I'm tempted to put a sign on his vent that says, "you toucha da vent, I breaka you fingers." Colby is exhausted. I usually get really ticked when people say they feel sorry for Colby, but this time around I think it's totally deserving. You know he has to be scared, tired, bored and sick and tired of people messing with him all the time. His RT tonight is Maria and if I didn't know any better, I'd say Colby has his first crush. She's so sweet and always talks to him during his cough treatments. He never takes his eyes off her. I think it's about the sweetest thing I've ever seen. For entertainment we're coming up with goofy names. Today Colby had nurse Super Steve, RT Jazzy Jen and CCA Narly Nikki. Yeah, how pitiful are we? So tonight we have nurse Katy and RT Maria. I'm thinking Kickin' Katy and Marvelous Maria, what do you think? Great googley-moogley, I need out of this place.

The good news is Colby's pulmonologist stopped by. Actually Colby sees 2 pulm. here. This doc has been with Colby since he was first diagnosed. He has never steered us wrong. Even Chris likes him. And guess what, I'm not totally crazy! He agreed with leaving Colby's settings alone and had some other suggestions. So glad to hear his take on all this. I felt much better after he left. Third time for "E" will be a charm. Don't really know when that's going to be, not for a few days though. Hurry up and wait, hurry up and wait, the story of our lives.

My sister-in-law came over and spent the day so Dad could go home and Mom could stay at home longer. She brought Eat, Pray, Love and we watched that. It was a nice change. Not that I don't love my parents being here with us, but some change is always good.

We got a sleep room tonight so I'll be able to get some uninterrupted, glorious sleep. Talk to you crazy kids later.

I'VE CALMED DOWN A BIT

Monday update: Not much. Colby's back on the vent, blah blah. We start this whole process over, blah blah. Chest x-ray looks good, which I totally can't understand, blah blah. Nobody can tell me exactly what we need to do different or what's going on with him, blah blah. Dad is sitting here working his crossword, blah blah. I'm doing anything and everything I can to keep myself from going completely bonkers, blah blah. Same things as before, except now we're on day 20 of this crap and we're all ready to see some turnaround, like NOW. But that's blah blah too. You all already know that.

This is what I do know. So far the cultures they took from the bronchoscopy have been negative. Just to cover bases we've started him back on the same antibiotics he was on prior to this past extubation/re-intubation. These antibiotics give Colby horrible blowout diarrhea. We've been tweaking Colby's setting a bit, nothing major, but I want him to sit on these settings for a couple of days. I'll make that perfectly clear at afternoon rounds today :-)

We've had some visitors over the last couple days. Rosa, Colby's super duper babysitter, and her mom came up for a bit on Saturday, bringing gifts to both Colby and me. She's never empty handed that girl. Actually I think she's pretty much a shopaholic. She found Colby the coolest t-shirt. It's white with a Spongebob face, then when you go out in the sunlight it turns yellow. Now if we can just get him outside to enjoy it! Chris came up yesterday to see Colby. Today my sis-in-law Anne came over to stay with us a while so Mom could go home to Jeff and to give Dad a little more break before his "shift" started. Tony and Anne have been great to help. They live about half an hour from here so Mom and Dad go over there to sleep, eat, shower, get a break, etc instead of driving all the way back home. Anne has been great to send food to me. The pot pie she sent today was super yummy.

Colby is a trip. He still has that "will you please just go away" attitude about him. The nurse or RT will say something to him and he'll just squeeze his eyes shut like if I don't see you, you don't exist. I think it's perfectly normal to have that attitude. We're all tired of being here, but he's the one who's fighting infections, getting the crap coughed out of his lungs after few hours, and has a tube shoved down his throat with strangers in a strange environment taking care of him. Actually the holistic therapist just came in to work with him. He loves that of course, getting rubbed on and lots of extra TLC. That's my stinker!

Can't stress again how much I love hearing from you all. Thank you for the calls, texts, Facebook comments, prayers, offers to help, words of encouragement. They keep us going. Please don't ever think I have so much going on that I don't want to hear about what's going on in your lives. Actually it helps keep me grounded. Everybody has issues and problems in their life, it's just that ours sometimes involve large chunks of time being stuck in a hospital. I'm enjoying this blog. Helps me get my thoughts straight & gives me something to do while in this hospital room. I'll update soon. Better news as the week progresses I hope. Toodles for now.

So I just have to throw this in for my sis-in-law: Dammit to hell, sonofabitch, I want us home from this fucking hospital, and I want it fucking now. Shit this is getting old! There Jennifer, was that better? haha.

SUPER SUCKY SEPTEMBER SUNDAY

If you don't want to hear/read foul language, then I suggest you don't read this update. This has been one of the shittiest days I remember in a very long time. So you know from my earlier post Colby has been re-intubated. We tried and tried. His RT last night had a very specific plan to keep Colby off the vent. He worked very hard with Colby throughout the night. Just wasn't meant to be. I really think Colby was a couple hours away from having an "incident" so I guess looking back I'm glad we re-intubated when we did. This was the 1st time ever Colby was intubated and it wasn't an emergency situation. At 6:00 a.m. they called Anesthesia and they used fiber optics to insert the vent tube. I was amazed at how smoothly the procedure went. So here we go, intubation #3. Shit the bed, I hate those stupid words. Intubate, extubate, intubate, extubate. I'm so over this crap. I want to take my sweet boy home and get back to our normal level of stress and overwhelming circumstances.

About 1:30 today he had a bronchoscopy. This is a procedure where they stick a scope/camera down into Colby's lungs. They looked around for mucous plugs, washed off his lungs and took culture samples. And guess what? They didn't find anything alarming. What the hell is going on with this kid? I don't know which is worse, finding out something or not finding an answer. Culture results will be back in 2-3 days. Colby was zonked out most of the day from being put into La-La Land with both his procedures. He woke up with his 4:30 cough treatment and has been up since. He seems comfortable but has a very "get the hell away from me" attitude and really, who can blame him. Wish I had a dollar for every person that's been in his airway the last couple of days. They've also started his normal feeds, no more TPN for now.

I've been trying to come up with a different plan of attack for Colby. I've asked every doctor, nurse and therapist who walks in here, what are we missing? Where do we go from here? We obviously need to do something different, but what? None of us have any magic answers and OMG it's so freakin' frustrating! I have decided to change his cough treatment schedule from every 3 hours to every 4 hours. I think he needs more rest. Other than that, we're going to wait for cultures and WAIT, WAIT, WAIT for Colby to get better. My goal was to get us home by my birthday. Guess my new goal is to get home in time for my surgery on the 27th. See, told you our September is super sucky. Hard to believe a year ago today was my fabulous surprise 40th bday party. I was riding around in a limo with all my best girlie friends celebrating in style, like I didn't have a care in the world. Yeah, hanging out in this hospital for the 3rd week in a row watching my son struggle for every breath he takes, feeling so incredibly helpless that I can't fix this mess is almost as fun. Screw this.

Oh, and let's just go ahead and talk about football for a minute. I've been looking forward to the NFL season for weeks now. Even though I know my Colts are going to struggle this year I still love to watch football. I was totally geeked to watch the Colts/Texans game today. And I'll be a monkey's ass if they didn't show it here in Cincinnati. They aired the Bengals/Browns game. Geez Louise, even people here in Cincy don't give a shit about the Bengals. I was so damn mad, I just about lost my freakin' mind. But maybe it was for the best, since the Colts got spanked and Colby's bronc was scheduled right in the middle of the game anyways. Fan-freakin-tastic. I know in the large scheme of things, overpaid, egotistical men running up and down a field playing a silly game doesn't matter. But I love football and it's a good escape for me, and I really love my Colts. Gonna be a long season without Peyton. Screw that too.

I WILL have better news soon. We WILL get Colby better soon. We WILL get out of this fucking hospital soon. I'm out of answers. I'm out of patience. I'm physically and mentally exhausted. So are my parents and so is Colby I'm sure. My nerves are shot. I miss my friends. I hate that we can't get out and enjoy this cooler weather. I'm irritated I have to worry about my upcoming bullshit surgery. I'm pretty much pissed off at the world at the moment. Just let me whine and have my meltdown moment for now. Tomorrow is another day, hopefully a better day. No, it WILL be a better day and I WILL stay strong and focused for Colby. This super sucky September can just get lost. We really don't have time for this shit, right Colby? Right Mama. Let's blow this pop stand.

COLBY KEEPS IT INTERESTING FOR SURE

You ever just have one of those days where you just want to crawl in a cave, escape from the world, cry, scream, cry and scream some more, then do it all over again? Well, we're having one of those months it seems. Colby has ever so slowly been decompensating since extubation this past Friday. In order to stabilize his heart rate and oxygen, we've had to up his pressures and backup rate, and switch to a full face mask in order to hold in the pressures. Then slowly over time, Colby's C02 has been getting worse and worse. The normal range for C02 is 35-45. Colby's started to go over 50, even 60, but I was thinking he'd be okay, just tweak the settings and give him some more time. Since he was starting to act up a bit, we put him on TPN, total parental nutrition, through IV instead of belly feeds. If you looked at him clinically he looked great, holding his oxygen level in the high 90's. Heart rate nice and low around 100-120. He looked comfortable and his chest x-ray looked good too. But he did have some destat episodes yesterday. We were having to do another set of cough assist treatments within 20 minutes or so of his scheduled cough tmts. But if you looked at Colby overall and took out the Co2 number, he looked okay. But by 5:30 this morning his C02 was almost 90. After much discussion with the docs and RT, we had no choice but to re-intubate Colby this morning. That's right, I'm so sorry to say that Colby is back on the vent. Shit!

So that's the latest shitty news for now. Totally sucks. As soon as I get some time, I'll update again. We've had shift change and I want to help get Colby settled in for the day. They have ordered a broncoscopy for today so that will give us a better idea of what we're dealing with, because right now we're kind of scratching our heads saying WTH?! This is not Colby's typical pattern. We'll figure it out though.

UPS AND DOWNS

Saturday update: I'm loving having this laptop here in Colby's room. THANK YOU Amber. Here's a pic of Colby in his awesome new Spongebob hat that the awesome Pruitt family gave him. Yep, that's what he looks like intubated. Not a pretty sight, but he's still just too cute for words. As soon as he's a little more stable, I'll take and post a pic without that stinky vent tube and tape.

Well, Colby is 25 hours, 50 minutes post extubation!! Yipee. He started out kicking butt. High pressures on the bi-pap machine but weaned down to room air oxygen very quickly, along with being able to use a nasal mask with a chin strap. Overnight his CO2 was a little high, so some ding-a-lings around here decided to wean his pressures from 28/10 to 26/8. I have said 1000 times over we're weaning Colby too quickly both on the vent and now on the bi-pap. His CO2 wasn't too off the chart that we needed to wean that much. HELLO, I'm the mama here, you need to listen to me. Wait, correction, you WILL listen to me and the next time somebody touches those bi-pap pressure settings I may just have to throw my first big stink fit around here. Then a different RT came in and did Colby's 3 a.m. cough treatment. I had drifted off to sleep. No questions were asked as to how we had been doing them. By the time the treatment was done, I was furious. It wasn't done the way his other cough treatments had been done throughout the day (successful with no oxygen drops) and Colby's oxygen dipped in the 40's. Needless to say that was the last cough treatment that person gave to Colby the rest of the night. He's getting the shaky vest and cough assist every 3 hours for now.

Things started to get really interesting, i.e. downright scary, this morning. Colby had a cough tmt at 6:00 a.m. Needed another 1 at 7:00 and things went badly. By 8:00 he was back up on his pressures, 28/10, rate 22, and 50% oxygen. We're now using a full face mask, a shield mask. Colby hated it at first but is doing better with it now. His numbers have stabilized and he seems more comfortable. He keeps it interesting around here, that's for sure. And the attending dr did agree with me that we weaned Colby too quickly. So for today we will work on weaning his oxygen down. He's now 45, down from 50. BUT THAT'S IT! No other changes. They just came in here and did a blood gas so we'll see what his CO2 is. He's sleeping away over there. Good for him. Mom and I are both exhausted. Neither of us got any sleep last night, especially Mom.

I'll update later. Expecting company later today, Colby's babysitter Rosa and her mom. Looking forward to it. Bye for now.

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.