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.

YOU CAN PLAN THAT YOUR PLAN WILL NOT GO AS PLANNED

Wednesday update: Throughout the night, Colby had some oxygen desaturations. Nothing major. One time it dipped into the 70's but for the most part it would drop to 87/88. It was happening at strange times, just out of the blue. Not during a cough treatment or not when Colby was being turned, just out of nowhere. Weird. Penny, one of our favs, was our RT last night. She said Colby was junky and coarse in his lungs. He was having trouble holding his oxygen so they bumped it up a bit. Room air is 21% and Colby had been there for several days. We bumped up to 30, then to 25, 24 and now he's at 23. Slowly but surely getting back to room air. That added with the drop in oxygen means, you guessed it, no extubating today. In rounds today we also discussed that Colby has a little somethin-somethin infection starting. Chances are it's from having a plastic tube down his throat, happens all the times with people who are on vents. So we're restarting antibiotics. Of course I'm very disappointed we didn't extubate today. I know Colby wants that damn thing out. But he's telling us it's just not time. All that thinking, praying, crying, researching, number crunching and all around stressing out about when to extubate Colby! In the end, Colby had the answer, he isn't ready. I think it was for the best. It's crazy up in that PICU today. Docs going in and out of rooms, on the phones, saying things like "can you get that STAT?!" We don't mind taking a back seat to the emergencies. Been there, done that, and I'm thankful that "all" we're worrying about is getting this kid off the vent. His blood pressure is normal now, seemed to take care of itself. He needs to pee more though. I suppose there's not a patron saint of urine either, huh?

So the plan for Colby? More of the same. Cough treatments around the clock every 3 hours using the MetaNeb and cough assist. They also took another culture sample from his tube to figure out what is growing infection wise. Monitor his blood pressure and temperature, which are both perfectly fine right now. Give him 1000 kisses. He had OT and PT today so he should be nice and stretched out. Give him 1000 more kisses and tell him how much everybody loves him and is praying he feels better soon. Stay on continuous feeds. Slowly wean O2 down to room air. Regroup and reassess in tomorrow's rounds.

How am I holding up? Completely bonkers today. By 9:00 this morning I had showered, dressed, done hair and make-up, straightened up the room and my out of town bag, gave Colby PT, fixed his hair, went to the cafeteria for coffee and sent about 20 texts. My sister in law gave me Eat, Pray, Love to read and I've also been reading a section out of Sunday's sports section about the upcoming NFL season. Go Colts!! But we did have a pleasant surprise today - company! April, a childhood friend, stopped by to see us. She was working in Florence and was nice enough to drive over, bringing a Pillow Pet for Colby and snacks for me. THANK YOU April, I'm thinking those mini-Reese's cups will be supper.

I'm so tired of looking at feet! That's what you do when riding in an elevator, look down. And what I'm seeing are flip-flop, sandal-wearing people with nasty, poorly painted toenails, crooked bony toes and calloused ankles. Disgusting! Geez people, cover those things up and put them in shoes where they belong!

I just love old, fat, jolly priests. The priest here, Fr. Mike, is a very sweet man. He came up today and said a blessing/prayer with us. He was all decked out in his black clergy wear, white collar, and suspenders with balloons on them. Ha, loved it. Went to noon Mass. The whole service took 14 minutes. We've got no time to waste. Pray, reading, homily, communion, peace be with you and we're outta here. I spend quite a bit of time in that chapel down the hall. My faith is the glue that holds me together. Well, it's holding me together fairly decent at the moment anyways. More later. Have a great day everyone. More later.

TUESDAY UPDATE

I'll be so glad when I can blog about something different than PICU's, blood gases, intubation strategies, etc. But for now, yep, this is our life. So here's the latest. Colby was able to sleep last night pretty much through the night. Of course they wake him up every 3 hours to do a cough treatment but he was able to go back to sleep fairly easily. Mom stayed in the room and I got a sleep room last night. I slept a whole 6 hours, which while in the hospital is pretty darn amazing. Colby's blood pressure still is a little too high. We're questioning what this could be. The best thing we could come up with in rounds this morning is stress/anxiety. Really hard to tell. It's not off the charts so I'm not totally freaking out, just half. Just one more thing to keep an eye on for the next few days.

So the docs were thinking extubation today and I was thinking tomorrow. After seeing Colby's blood work from overnight, the docs did not want to extubate today either. Colby's white cell count is up a little so we're going to keep an eye on him and reevaluate in the morning. Also, there's this cool new test they can do to determine whether or not Colby is getting a bacterial infection. Don't have the name of it in front of me. Begins with a P, some really long, strange word. But anyway, this substance, whatever it's called, is in everyone's body. They don't seem to know the function of it. HOWEVER, based on research by a PICU doctor here at Cincy, it has been determined that when this P-something level rises, the patient will get a bacterial infection. The more the P-something rises, the worse off the infection is going to be. So it's like a precursor to help figure out what's going on with infection. And it doesn't work on viral infections, only bacterial. Pretty damn fascinating if you ask me. To think a doc here at Cincy in the PICU, Colby's attending last week as a matter of fact, discovered this tool makes me love this hospital even more. Colby still doesn't have a fever and his x-ray this morning still looked good. He is holding a TON of fluids though. He was positive 1 liter of fluid for the day yesterday. He is peeing, just not peeing near enough. Guess I'll have to get in touch with my inner Pee Whisperer and see what we can do for the boy.

That sums it up. Dad is here with me now. When I left to walk Mom to the parking garage Colby had just gotten done with occupational therapy and was getting his 12:00 cough treatment. I snuggled up in bed with him for a bit today. Not an easy task moving around vent tube, feeding tube, leads, IVs, etc. But we managed. If you ask me, it was the best medicine Colby could get, a little TLC. It sure did wonders for my overall well being. More later. THANKS everyone for the continued prayers and support. Colby WILL beat this stupid pneumonia and we WILL get home just as soon as we can.

ARE WE READY? SO HARD TO TELL

Basically I see improvement in Colby overall. His secretions are much thinner and there are less of them. That's a good thing. We're continuing cough treatments every 3 hours around the clock and have done so for the last 4 days I think. Colby still has not had any fever. That's a good thing. His x-rays are looking clear with no signs of collapse or pneumonia. That's a good thing. Since no cultures have grown in any of the samples they've taken, we're discontinuing the antibiotics. That's a good thing. Docs have finally decided to take Colby off Lasix since he wasn't responding that well to it. That's a good thing.

So why am I freaking out and am hesitant to extubate (take Colby off vent?) Well, because last time when we were what we thought was overcautious, the extubation didn't work and it was a huge setback for Colby. I've been talking to other SMA families, asking them what checklist they follow before they agree to having their kiddos extubated. This time around I just want to make sure I have more info. so I can make a better decision. I'm a complete nervous wreck. I really am. I know it's hard to ever know if you're making the right decisions for your kids, but in this instance it can literally be a life or death decision and of course I don't take that lightly.

Colby did have a little bump in the road last night. His blood pressure was elevated for a while. They gave him a dose of Lasix because he is holding so much extra fluid, which can contribute to high blood pressure, but that really didn't work as well as they had wished. Colby didn't pee out as much fluid as they were hoping (that's why they agreed to discontinue it). Then they decided to put him on hydralizine but by then Colby's blood pressure was getting back to baseline, so they didn't give that to him. I'm not too stressed over it. I think it was an isolated incident. He also didn't sleep any last night. I mean none! He took a big nap yesterday. I just assumed he was catching up on sleep. But maybe he's already caught up on sleep because last night those big brown eyes were wide awake pretty much all through the night.

Colby's right foot looks awful, very puffy and swollen. This is the foot where the IV blew out and the medicine leaked out into his foot. Also the foot where they gave 5 antidote shots to absorb the medicine. So I'm hoping it just needs more time. I've had every doc and nurse look at it and they seem to think it'll heal on its own. Sure hope so.

So, I need to do a little more reading, talk to Colby's neurologist, and there is 1 other SMA family I would like to talk to before deciding about Colby's extubation. At this point I'm thinking Wednesday, if Colby continues to do well with no oxygen drops, drastic changes in labs, etc. Okay everybody, start praying for a smooth sailing, successful extubation. Don't know if there's a patron saint of ventilators. If not, there should be!