I'M AMONGST THE LIVING

I was soooo freakin tired yesterday, it was honestly hard to function. Today is much better! I went over to the Ronald McDonald House last night around 11:00 and Mom stayed here with Colby. I felt really guilty leaving Colby. I've never spent a night away from him when he's in the hosp. Even though I was only a block away, it was weird. I was too tired to argue. I've had a solid night's sleep and I'm rarin' to go. Or as rarin' as I'm going to get.

Colby's chest xray looks unchanged (sigh). Actually I think it's a teeny bit better but not by much. A far as Colby's treatment plan, no big changes today, pretty much more of the same. We have a new attending dr, they change on Fridays. This attending knows quite a bit about SMA so thank goodness for that. Colby feels absolutely crappy! Even with all the trauma he went through last hospital stay, he still seems to feel worse having the flu. He is just miserable and I hate it, hate it, hate it. He hasn't had any fever for a couple of days. He had a little trouble with his 11:30 cough treatment last night but since then it has been smooth sailing.

Not much else to report. Mom is going over to Ron McD House to get her key, checked in, etc. She needs a nap so I hope she stays over there a while. I'll post more later.

BRAVEST KID I KNOW

Colby is such an amazing kid. I'm blown away by his willingness to just keep fighting the fight. I know he's trying everything in his power to get better. So incredibly proud to be his mama.

Overall Colby is doing better. Say it takes, on the average, for someone to get over the flu in 5 to 7 days. For Colby it will take much longer b/c he also has to deal with the pneumonia and effusion. Yesterday we had decided if Colby's xray wasn't any better he would have a broncoscopy done. He must have heard us haha, because this morning his xray finally showed a little improvement. We decided to not do the bronc today, which suited me just fine. The less procedures we do to Colby and the more he can kick this on his own, the better off it will be. Even though his xray was better, I could tell something was wrong with him this morning. He seemed to be uncomfortable and his heart rate was way too high, 130 to 140. So I had some ideas and was determined to hold my ground and fight with the docs to get these changes made. The attending dr came in, I expressed my wants and concerns, and viola, she agreed with me. Really? I was all geared up to throw a hissy fit, but I'll save that energy for later I suppose.

They had Colby in a mode on the vent that would give him a set tidal volume, which they had set too low to begin with, and Colby would determine the pressure rates. It made no sense to me why he was on this mode, as we didn't use it last time he was in the hospital. So they agreed to switch the mode. I also wanted to cut back on the Lasix, they agreed, and it's down to 2x daily. I also wanted pulmozyme used from 1 time daily to 2 times daily. SMA FAMILIES: if a doc or hospital ever tries to tell you pulmozyme is for CF patients only, tell them they are full of shit! It doesn't work on every SMA kid but does some, so don't be afraid to try it. This is the 1st time Colby has used it and I do think it's helping. And just to be on the safe side I requested cultures be taken so if Colby has any nasty bugs growing we can start treating them sooner than later.

We're also trying to get Colby's surgeries scheduled, since he is currently intubated. I think some people are confused. Before Colby got sick and admitted to Cincy, I was in the process of scheduling surgeries for him to have over spring break. He needs 7 baby teeth pulled and I figured since he would be under, why not go ahead and have the ascended testicles surgery done. Now, after this hospital stay, I have also decided to have a port placed for Colby. This will allow for IV access whenever we need it. We got "lucky" this tme and have been able to stay a step ahead of his illness (sort of) but that is not always the case. After 2 failed PICC line attempts, I was like yep, something has to change. Oh goodie, one more thing for me to learn.

That's it for today. I look like crap. I feel like crap. I'm tired, grumpy, sore from sleeping on a horrible excuse of a bed, tired, didn't get a shower today, worried, tired, frazzled and oh yeah, tired. After 9 years of coming here, we finally got smart and we're giving the Ronald McDonald House a try. We now have a room there and as long as Colby is doing this well, I'm going to go over tonight and give it a try. My mommy brought me roast, potatoes and carrot for supper. I'm very excited about that. Real food! If this update has a bunch of typos in it, sorry. I'm typing on Colby's tiny iPad keyboard and I'm too lazy to proofread. At least I can admit it! Bye for now.

TUESDAY'S TALK

You can beam me up. Better watch out for flying polka dot pigs. They're building snowmen in Miami. Why would I say these crazy things? Because Colby Michael doesn't want to watch Spongebob Squarepants!!! I have NEVER seen this kid feel so badly that he didn't want his Bikini Bottom friends around. But right now he doesn't want it. He has slept and slept again today. You can tell he is SO over this crap all ready.

If you haven't heard, Colby has type A flu. Of all the things he could have tested positive for, I wasn't expecting that. So his underlying SMA leads to a weak respiratory system, which leads to him getting the flu. Getting the flu immediately settled in his lungs, leading to pneumonia. His lungs filling up with pneumonia brought on the effusion. Make sense? Basically, it's like this: SMA sucks and any little illness Colby gets goes straight to his lungs and causes chaos. Clinically he is doing better. Still has a little fever popping up but overall it is improving. He's down from 3 antibiotics to 2. We able to make some changes to his vent (for the better b/c his lungs are slightly improved). Continuing the Lasix to dry up the lung effusion. But as I said earlier, I've never seen him act this puny. He is just flat out wore out, which the docs say is perfectly normal when you have the flu. He's sleeping more than usual and when he is awake, he doesn't want to be touched, bothered or talked to as far as that goes. We're keeping it quiet around here so he can get lots of rest.

I'm a little stir crazy. My mom was here for a couple days, now dad is here for a couple. My BFF sent up her Kindle, along with tons of snacks. Thanks, Amy! Chomping on some Sun Chips right now. Saving the Ritz crackers until later haha. The nurse and I (yes it took both of us) just pulled out a slimy string of snot from Colby's nose. TMI I know but remember, that's what we SMA peeps talk about, along with bowel movements.

Need to get the iPad charged so I'll stop for now. More later.

So, Mr. Colby is in Cincinnati Children's Hospital, AGAIN, and had to be intubated, AGAIN. Let me start by saying shit, shit, shit to that. How did we get to this point? Not sure if I should start with the current and work backward or start from Friday and work my way forward. Yeah, that's probably best.

Obviously Colby started doing worse by late afternoon Friday. I wanted to pitch him in the van and take him straight to Cincy. The ex and Colby's pulmonologist talked me into taking him to Kosair first to make sure he was stable, get IV access and get an ambulance ride to Cincy. While I wasn't thrilled with the idea, that's what we did, and it all worked out for the best I suppose. (You know I'm not saying they were right and I was wrong, oh heck no). The ex, his wife, and I got stuff together and took Colby to Kosair ER. Got an IV in Colby, then waited what seemed to be an eternity for Kosair's transport team. We finally got to Cincy at about 10:00 Friday night. Just in time to watch the IU/UK game (so sad for my Hoosiers).

By Saturday morning Colby was worse (dammit). We tried different bi-pap machines, different masks, started Colby on antibiotics, but he was getting worse, not better. We decided to go ahead and intubate him. I was so discouraged. However, he was abolutely heading in that direction, so we intubated him in a controlled environment instead of waiting for a life/death situation. Had enough of those thank you very much.

Colby had 2 IVs, one in each hand. Knowing Colby's history of blowing IVs, being a "hard stick", and needing stronger IV access, we decided to put in a PICC line. That was an epic fail! Again, I was so discouraged. They came bedside on Saturday, tried both arms and could NOT get the PICC in. Someone else tried again Sunday morning, didn't work. That's how uncooperative his little veins can be. So, yesterday afternoon they put in an IJ (central line through the jugular). After this procedure Colby decompensated a bit. They took an x-ray to look at the IJ placement and his lung looked like a freakin snow storm. For those not familiar with reading chest xrays, you want to see black on xrays, which is air, opposed to white, which is fluid, infection, gunk, etc.

He had a fairly rough night. High heart rate here and there. Fever up and down. Oxygen levels dipping to 87, even on the vent. Today in rounds we decided to change his antibiotics. Discontinued the original 2 and now he is on 3 different ones. Also started some Lasix. I'm not at all happy about this, but we have to do something to clear up the effusion in his lungs and this is the least invasive treatment course. Right now Colby is resting comfortably, sleeping actually. His numbers are a beautiful 96 oxygen and 107 heart rate. He has slept and slept this hospital stay, actually to the point it has me concerned. I know he's been through a lot, but he's just not much of a sleeper, even when sick. He seemed uncomfortable so I was having them give him a dose of Ativan here and there. He hasn't had any since last night before bed, though, and here he is still snoozing away.

That's about it for now. I'll update more later. Guess I should nap while Colby is sleeping, too. Thanks to everyone for the continued prayers and get well wishes. I know how much you love sweet Colby boy (and me too I suppose) :-)

WELL POO-POO ON THIS

Remember how I said things were uneventful around here, well not now! Had to keep Colby home from school yesterday. He has some major head congestion. How did this happen, he was fine 2 days ago?! You can hear the rattling in his nose/throat from 2 feet away. Keeping him on his bi-pap continuously. Doing cough treatments every 3 hours, even through the night. So far his secretions have stayed clear, no yucky green or yellowish nastiness. Yesterday he looked horrible through his eyes, but today he seems to act a little better. I'm trying to get him to take a nap right now. Trying but failing. TVs, radios and lights are all off. I'm in here in the living room and Colby is back there in his room. I just peeked in on him, yep, wide awake. He should be exhausted, first of all because he's sick and second of all I woke him up every 3 hours to cough him last night. It's a perfect day for a nap - dark, pouring down rain. Come on Colby, get with the program. Colby's pulmonologist thinks what he has is viral and doesn't want to put him on an antibiotic just yet. I don't know if I agree with this or not, but I'm willing to give it a shot for a couple of days. If he's no better by this time tomorrow, I'm going to insist putting Colby on an antibiotic.

I was supposed to work at the hospital today, but obviously that didn't happen. When I got Colby up for his 5:30 a.m. treatment, it did not go well. I was thinking oh crap, this kid will be in the hospital before the end of the day. Finally got him stabilized, but just couldn't leave him today. His 8:30 a.m. cough treatment went much better. You know what else I've done today besides take care of Colby? Absolutely nothing. Among his shaky vest, nebulizer and cough treatment schedule; feeding and giving extra free water schedule; giving him extra lovins and calling Cincy, I haven't got a darn thing done. Except this blogging! Haven't even unpacked the dishwasher or thrown in a load of laundry. Those are the simplest of chores. But then I'm like, oh well, who gives a crap, it'll be here waiting on me. I'll get to it when I get to it. I've made arrangements with Colby's nurse, so hopefully I'll get to go to work tomorrow and make up for the time I lost today.

Of course it's pouring down rain and Colby doesn't feel well on a day I've made plans. Isn't that the way the cookie crumbles, haha. Wine Night is tonight and I'm planning on going. I know what you're thinking. If Colby is so sick, why are you leaving him? Okay, I can answer that. The nurse staying with Colby tonight has been with us for over 2 years now. She's fully capable of taking care of him. Plus I'm planning on coming home early. Plus I'm going to plan it where she won't have to do much with Colby's care. I'll do a cough treatment right before I leave and when I get home. He'll be on his bi-pap most of the time I'm gone. Am I nervous about leaving him? Yes. Do I think he'll be okay while I'm gone? Yes. Do I think if he has issues the nurse can handle it? Yes. I would never, ever, ever do anything to put him in any kind of danger. Any other questions you may have? Didn't think so.

Well, it's 2:00. Time to feed my no-nap kid. Then at 3:00 another cough treatment. Good times, gooooood times. I'll update soon.

p.s. - GO IU FIGHT FIGHT FIGHT.

WEDNESDAY'S WORDS

Well, I'm having a hard time getting this blog started today. It's been a good and bad kind of day. I feel like I have nothing to say and also want to just type and type and type, let it all loose. Guess none of this makes any sense, so let's just start with the facts.

So far it has been a very good week. It has been our favorite word, UNEVENTFUL! All that craziness with Colby's high heart rate and the choking/plugging episodes seem to be long behind us, for now anyways. He went to school Monday and Tuesday with no problems. Yesterday we had his IEP meeting and get this, even Colby's dad went! Yep, you read my words. I asked him if he wanted to go and he said yeah. Then I thought oh crap, do I really even want him to go?! Never know what's going to fly out of his mouth. But it was fine. I guess I just wanted him to get a better feel of the things that have to be done for Colby besides taking care of his day-to-day medical stuff. The main goal for Colby's IEP is to use his eye gaze more while at school. I'm hoping the more he uses it, the more importance he will put in it, therefore using it more as his "voice". Colby's speech therapist, Amber, deserves a big, fat THANK YOU VERY MUCH. First for seeing that Colby is smart enough to use an eye gaze communication system, and second for her learning to work it and program what Colby needs on it. She has pretty darn high expectations for Colby and expects him to work hard while in school. Sometimes I don't think he really knows how to take that, but I love it.

Dad and I took Colby to his eye dr appointment today. Luckily Cincy Children's has some offices in northern Kentucky, too. That cuts about 16 to 18 miles off our trip, one way, which is super duper. His vision prescription has changed a little. The ophthalmologist had a very interesting suggestion, putting Colby in contacts. When he first said it, I thought he was nuttier than a fruitcake, but in reality it makes good sense. As you know if you wear glasses, you can only see through what's inside the frames. Contacts would help open up Colby's field of vision. I'm just milling the idea around right now, but leaning toward at least trying it. What could it hurt? I think we would know fairly quickly if Colby would tolerate the contacts. And hey, I already have 62 steps in getting Colby up for the day. Might as well make it 63, right?

Trying to schedule surgeries for Colby also. He's going to for sure have the oral surgery to remove the 7 stubborn baby teeth that are still hanging around, literally. Wonder if we could just relocate one of those teeth up to where he lost the one during his last hospital stay? Okay, I don't think it exactly works that way, but it would be nice to have that tooth back in his head. If it's possible to coordinate, he will also have the surgery to correct his ascended testicles. I'm sure Colby is just thrilled I'm sharing his testicles with the whole worldwide web, but hey kid, it is what it is. Your jewels needs to be relocated. However, I don't consider the 2nd surgery a "have to do" kind of thing. So he'll have it only if it can be coordinated with the oral surgery. Trying to get this scheduled for Colby's spring break, which is just a couple weeks away.

I guess I'm feeling a little defeated today. I suppose that's the word I'm looking for. Please don't take this as a pity party, but I'm reminded all too often at just how badly SMA sucks. I shouldn't be complaining, Colby is doing great right now. It's just that with SMA, it's always something. If he's doing okay with respiratory, then something else needs to be addressed. If he's okay physically, then new equipment or supplies need to be ordered, etc. SMA is all encompassing, this affects that, that affects this. I mean really, I should be planning us a fun family vacation for spring break, not surgery for Colby. It's bullshit. Okay, wow, this is starting to sound like a pity party so I'll just stop. I think you get the gist of what I'm trying to say.

The bottom line is, I hate SMA more than you can imagine, but I love my sweet Colby boy so very much. I don't worry about the things he can't do. Instead, I focus on all he has accomplished over the years. He's so freakin' cute and has such a sense of humor. Every day with him is a blessing. And please know I never lose sight of that. Time to get him fed, give him his meds, and then off to bed. School day tomorrow!

OUR PERFECTLY "NORMAL" WEEKEND

We had a perfectly lovely weekend, thank you very much. Perfect weather. Got Colby outside both days and let him drive his power chair around the parking lot. He did a darn good job. He actually had some intent and purpose to his driving, for the most part, steering AWAY from parked vehicles. That's a nice change haha. I got really brave, or really stupid depending on how you look at it. Colby and I took off to TJ Maxx for an hour or so. Trust me, he's not much of a shopper. The last time I took him shopping it was a complete, scary disaster. Not this time! We only stayed for a little over an hour and I had his bi-pap, suction and oxygen all right there with us. No problems. He also worked with his eye gaze both Saturday and Sunday. He's so fun to watch. He goes to the same things over and over. Like I mentioned before, he keeps going to this one icon that says "yum!" Now, I have no idea why he's doing this, he doesn't eat by mouth for crap's sake. I finally said Colby, stop saying that all the time, you goofball. The very next thing he found and said was "sorry". I swear, that kid cracks me up every day. Or he'll say something off the wall, then he'll find the "just kidding" button and say that. He definitely has a silly, comical kind of personality. Hmmm, where do you suppose he got that?

When Colby's dad was here with him Sunday, I went out shopping for a bit. Trying to get my bedroom redecorated. I've rearranged my furniture in there twice in the last 2 months. I kept the comforter set I had and bought new pictures, lamps and a small nightstand. Also bought a dresser but it's going back. Don't like it in there at all. As soon as my interior decorator (aka BFF Joni) comes over and gives the thumbs up or thumbs down, I'll get everything out and on the walls. I'm pretty sure some of the stuff I bought will get taken back. I have many talents, decorating simply isn't one of them.

Colby's IEP meeting is tomorrow. Oh boy, those can turn into marathons sometimes. Actually I'm thinking it will go okay. I know they had a pre-meeting to make sure everyone working with Colby at his school is "on the same page". As long as everyone agrees that my kid is a freakin' genius, I see no problems whatsoever. Know what I mean, Vern?

That's about it I suppose. Sad to hear Peyton Manning is moving on to another team. I will always think of him as an Indy Colt. It will be very hard to see him wear another team's uniform. Also, I'm very worried about him getting hurt again. Why doesn't he just retire from playing?! He would make an awesome offensive coordinator, or even an announcer. But that's just my two cents worth, and yeah, I know that's exactly what it's worth, a whole two cents.

I've exercised 3 days in a row, and trust me, I'm feeling it. Being out of shape sucks. So when I get on the scale in the morning, I'll be skinny again, right?

Now you know I can't end today's update without saying GO IU, FIGHT FIGHT FIGHT!! So, so proud of my Hoosiers. I'm scared to death of them playing UK again, but I'll be cheering them on no matter what! March Madness, you just never know what's going to happen.

I still need to get the dishwasher loaded, I better end for tonight. Plus I'm starting to get a bad case of the yawns, so Adios Amigos.