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.