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.