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!

SLOW AND STEADY WILL WIN THE RACE

Friday update: Colby had a good night last night. He's getting cough treatments every 3 hours around the clock. They're using some funky new machine to help break up the gunk in his lungs. It's doing wonders! Hard to explain, but it's like his shake vest, but it shakes him from the inside out instead of from the outside in. I can't believe the huge amount of crap he has down in his lungs. Where is it coming from? Will it ever start to decrease? How did he get so sick so quickly? Was I ignoring the signs? What should I have done different? What soups are they offering in the cafeteria at lunch? Does my plant at home need watering? Why does my kid have to go through this time and time again? When will we get home? How much work am I going to have to miss while Colby is in the hospital? When I get my hair cut off, should I get some highlights too? There are so many things you think about when all you're doing is sitting, waiting, praying your child gets better. I feel so helpless when he's on the vent. I feel so helpless a lot of the time.

We've been able to cut back on Colby's pain med some. He took it at 10:30 last night and didn't get it again until 8:30 this morning. He looked very bright eyed and alert this morning (before the morphine). His icky diarrhea seems to have cleared up some. Overall he's doing well. So the plan is more of the same. Keep Colby on the vent. Keep weaning the settings very slowly. Hang out until he's ready for extubation. Then pray like crazy that goes smoothly.

Everyone here is so wonderful. Nurses and RTs who have had Colby as a patient in the past have stopped by to say hi. Mom is here with me now. My sister-in-law is coming over in a bit and Mom is going to head home for the day/overnight. Colby's dad is coming to see him after work and my dad will be back tonight, too. A lot of you have asked how I'm doing, too, and I appreciate it. For the most part I'm okay. Not totally stir crazy and wigging out just yet. My biggest concern is we have 18 days to get Colby home and doing better so I can have my surgery. May seem like a long time, but really it's not. So yeah, that's freaking me out quite a bit. I know, we just gotta take one day at a time. Colby WILL recover and he WILL be the same ole Colby he's always been. That's what matters. Better get going. Won't be able to update over the weekend because the library is closed. Geez, am I the only person on the planet that doesn't have a laptop? THANK YOU EVERYONE, really, for the calls, texts, e-mails, prayers. Can't wait to get home and get back to "normal".

UPDATE - Thursday

Overall I think Colby is doing well. He still does not have a fever, that's a plus. They've started him on his feeds, that's a plus. He was on 2 antibiotics, now he's on 1, that's a plus. He was seen today by PT to do some stretches and range of motion exercises, that's a plus. I usually do PT at home but with all the leads, tubes and such stuck in Colby I'm a little nervous doing it right now. He had a higher heart rate for about 1.5 hours today, but it was nothing a little morphine couldn't handle. I think he's definitely still in pain/discomfort.

The process for weaning an SMA kid off a vent is slow and steady. The goal is get down to Colby's home bi-pap pressure settings then try to extubate him from the vent. From there he will go to wearing his bi-pap 24/7. The plan after that is to start taking windows, usually 20 to 30 minutes at a time, until Colby gets back to his normal home routine. His home settings are 21/7. He started out on the vent at 24/7. He is now at 23/7 and at rounds this morning, the docs and I agreed to take him down to 23/7. This hasn't been done yet but I'm going to check on it as soon as I get back to his room. So everything at the moment is moving in a forward direction and that makes Mama very happy. We'll be here a while, like I said you have to be very cautious with an SMA child and not rush into extubation. We learned that the hard way, but we know better now!

Colby has gotten balloons, books, get well e-cards and I know everyone is praying for his recovery. I also know you're praying for my family and me and IT IS MOST APPRECIATED. THANK YOU VERY MUCH. Just keep hoping that's Colby's progress moves in the forward direction, no setbacks allowed! My brother and sister-in-law are taking good care of my parents. They live about 40 minutes away so Mom and Dad trade staying with Colby and me, then going over there to eat, sleep, shower, etc. Anne sent me some ham and biscuits and a piece of pineapple upside down cake. Sure beats the soggy french fries I ate in the cafeteria last night. Bye for now. More when I can.

THINGS CHANGE QUICKLY AROUND HERE

Very interesting last couple of days. Colby had a great 1st day of school. Couldn't have gone better. Then I get a text from his nurse the next day at 5 a.m., which is never good news, that her son is sick and she won't be able to go to school with Colby. So yep, he missed the 2nd day of school. Yesterday he went but had a rough day, oxygen levels a little lower than normal and high heart rate. I had noticed when I got him up yesterday he was more "gunky" than usual but once he had his breathing treatments I thought he would be okay. I thought wrong. He had an "incident" at school and his oxygen dropped to around 40 they said. Isn't that special?! He was exhausted the rest of the day but his numbers were good so I decided to go ahead and go to Wine Night. He seemed to be doing okay, then around 5:30 this morning, beep, beep, beep. His heart rate was 130 while he was wearing his bi-pap, not good! Then his oxygen started dropping and both alarms were going off, really not good! It took a while to get him stable again. He had just the slightest bit of a temperature, really not even enough to treat, but I gave him some ibuprofen anyway. I've decided to do treatments every 3 hours and we'll see what happens.

The next piece of interesting news is...my surgery has been rescheduled. My ENT is just about to piss me off. Luckily I took the initiative because they hadn't called or sent any paperwork concerning my surgery, which was scheduled for next Tuesday the 23rd. I got to thinking whether or not I needed pre-op blood work done again so I called to check. The scheduling chick called back to say yes, I need pre-op work done within 2 weeks of surgery, and oh by the way, the dr. wanted to see if we could move my surgery to September 13. Obviously there's no hurry in getting the other side of my thyroid out, huh? When she called I was right in the middle of a meeting with Colby's principal trying to get transportation issues worked out (another clusterfuck I had to fix yesterday). And also since I've been having some issues getting nurses and sitters, I agreed to it. I'm hoping that by the time Sept 13 rolls around Colby will be in a normal school schedule and the nurses will be readily available so I can get the coverage I need for Colby when I'm recovering from my next slice-n-dice.

Never a dull moment, huh? Gotta run, time for Colby's next batch of cough treatments. Keep your fingers crossed he's just having allergy issues.

PERFECTLY ORDINARY

Today was a day I wouldn't trade for anything. Turns out Colby's first day of school was cancelled because of the storms over the weekend. I mean seriously, I couldn't even believe it. It also turns out that the dermatologist I type for on Mondays is on vaca this week. So we had a FREE day. No school, no work, just Colby and Mama time. No big plans, we just took the day as it came. The weather today was gorgeous and there was no way we were going to let that go to waste. Took Colby outside to practice driving his power chair. Mom came over for a bit. Then his friend Amber came over and they worked on eye gaze for a while. Plus, for the first time this summer, we were able to get outside and SWING. I had Dad bring that thing over back in May and it's been so stinking hot and miserable I couldn't get Colby outside. But tonight we were just a swingin'. I had my iPod in 1 ear and Colby jabbber-jabbering in the other. I couldn't have planned this day any better. Funny how things have a way or working out sometime. Now I'm going to hook up Colby's feeding for the night and soak my big butt in the tub. Perfect ending for a perfect day :-)