How has your Saturday been? Ours has been...wait for it...UNEVENTFUL! That's our favorite word. Colby has made FORWARD PROGRESS, our favorite phrase. We were able to adjust his settings today from 28/8 to 24/8. First we did 26/8. Yes, I said I would only allow for 1 setting adjustment today. We talked about it in afternoon rounds. I told them to take another blood gas and if his CO2 was too low, I would consider it. So they did and guess what, his CO2 was very low, like 28. Colby is kicking some bi-pap ass and it was time to move his settings down even more. I think tomorrow we'll work on adjusting his rate. I'd like to leave his pressure setting alone for a while. He's over there just sawing logs. Oxygen 100, heart rate 61, lol. It doesn't get much better than that. We got a sleep room tonight so I'll send Dad down there. We're currently watching the LSU/West Virginia game. We have the same RT for the 3rd night now, so I won't have to be getting up with Colby as much to help with treatments. Sleep is good.
The goal tentatively is to go to TCC on Tuesday. Colby is definitely not ready for windowing yet. We had his bi-pap mask off just long enough today to wash his face and change out the protective strips that prevent skin breakdown from wearing the bi-pap so much. His oxygen dropped to 88, bummer. All in good time. I'm still extremely pleased with this "e." It has gone better than any "e" he's ever had.
Are we home yet?! Are we there yet?! It won't be long now, hallelujah!!
Saturday, September 24, 2011
Friday, September 23, 2011
LOVE SHARING GOOD NEWS!
Colby has had an excellent day. No desats, no changes in levels/numbers that have us concerned, no problems whatsoever. At rounds tomorrow we'll talk about adjusting Colby's settings some. Notice I said SOME. We're not going to move the pressures and the rate both at once. We can do 1 or the other, then give Colby 24 and make sure he's okay, then do the other. Period, end of story, we're doing it Mama's way. Like I said, even though he's doing awesomely awesome, no way I'm rushing things. He's over there jabbering away watching a DVD. He definitely needs to sleep tonight. What is it with this kid and not sleeping! Oh yeah, he's in a strange place with strangers caring for him. I get it. He's not due for a cough treatment until 11:30, but we're going to have lights out as soon as I get this update done. I'm sure he'll fall asleep then it will be tmt time. Dangit, poor bubba.
Things I've learned lately:
1. What the word "copious" means (excessive, in abundance, as in Colby's secretions until a couple days ago.)
2. The 4-letter word I really hate right now: plug, as in Colby plugged, his air was cut off and here we are still in the hospital. My favorite 4-letter word right now: home, even if it is just a dumpy, cluttered apartment. Can't wait to get there.
3. I get by with a little help from my friends.
4. They should put a bar somewhere in this hospital. Forget free pizzas on Wednesdays, pass out vodka instead please.
5. I have the most loving, concerned, supportive, bestest parents on the planet.
6. I like French onion soup. It does not like me. Bleh.
7. Spongebob Squarepants has healing powers. Or at least in my kid's world he does.
8. Prayers get heard, and answered.
9. I'm ready to enjoy the cooler upcoming fall weather. If anyone wants to have a bonfire/marshmallow roast and invite Colby and me, feel free.
10. Colby's body may be weak, but his will is strong. He is the most tolerant, sweet, beautiful boy I know. MY KID IS A ROCK STAR!!
Things I've learned lately:
1. What the word "copious" means (excessive, in abundance, as in Colby's secretions until a couple days ago.)
2. The 4-letter word I really hate right now: plug, as in Colby plugged, his air was cut off and here we are still in the hospital. My favorite 4-letter word right now: home, even if it is just a dumpy, cluttered apartment. Can't wait to get there.
3. I get by with a little help from my friends.
4. They should put a bar somewhere in this hospital. Forget free pizzas on Wednesdays, pass out vodka instead please.
5. I have the most loving, concerned, supportive, bestest parents on the planet.
6. I like French onion soup. It does not like me. Bleh.
7. Spongebob Squarepants has healing powers. Or at least in my kid's world he does.
8. Prayers get heard, and answered.
9. I'm ready to enjoy the cooler upcoming fall weather. If anyone wants to have a bonfire/marshmallow roast and invite Colby and me, feel free.
10. Colby's body may be weak, but his will is strong. He is the most tolerant, sweet, beautiful boy I know. MY KID IS A ROCK STAR!!
MY NEW FAVORITE WORD...PROGRESS!!
I think we'll be home soon. Yep, I said it! Colby is doing amazingly well. I think he just needed some extra time/antibiotics before coming off the vent. All those numbers and levels we look at have remained stable, so it hasn't been any problem convincing the docs to leave his setting alone for a while. We do have Colby weaned down to room air oxygen on his bi-pap, but other than that, no changes for now. No need.
Colby is wearing his bi-pap 24/7. The only time we take it off is to give him cough treatments, and even then we place it back on his nose between cycles. Not taking any chances! He's using his mask from home, a nasal mask. So we've had to use a chin strap with it in order to help keep him mouth closed to prevent pressure leakage. I know he doesn't like it, who would? He also can't wear his glasses while wearing the bi-pap. But I talked to Colby and I'm sure he understands these are small sacrifices to having that flippin' tube out of his throat. His jabbering is so sweet to hear, cracking all the nurses and RTs up b/c they haven't heard him until now. He's on his home feeds now, done with the TPN. Yeah, my kid is a total butt-kicking rock star.
The plan from here? In rounds this morning I heard words like "move down to TCC" (transitional care unit) and "home maybe next week." Probably starting tomorrow we'll start to wean his pressure settings just a little. Then after a day or 2 of that, start windowing (taking small breaks off the bi-pap.) I'm very picky about windowing, imagine that, and he'll start out very, very slow. No way am I pushing him to spend time off that bi-pap. All in good time and I'll do everything I can to make sure his progress is nothing but forward, no sliding back after he's come this far.
That's it for now. Pretty darn good, eh? Dad is on his way here and Mom will go home for a day or 2. I'm not going to lie, I'm very tired. Whatever the adjective is that comes after tired, grumpy and exhausted, that's me. I knew once he came off the vent, that would be my time to totally kick into Super Mama status. I need to watch that everything is being done correctly, at the right times, and also watch Colby's overall behavior. Yeah, you thought I was particular before, you should see me now. I bet they can't wait to get us out of this PICU! Actually I think the staff here really likes SMA parents simply b/c we're knowledgeable for the most part on what's going on with our kiddos. We know the lingo and understand how it all relates. Never wish I had to be so damn smart about this crap, know what I mean Vern? Later, taters.
Colby is wearing his bi-pap 24/7. The only time we take it off is to give him cough treatments, and even then we place it back on his nose between cycles. Not taking any chances! He's using his mask from home, a nasal mask. So we've had to use a chin strap with it in order to help keep him mouth closed to prevent pressure leakage. I know he doesn't like it, who would? He also can't wear his glasses while wearing the bi-pap. But I talked to Colby and I'm sure he understands these are small sacrifices to having that flippin' tube out of his throat. His jabbering is so sweet to hear, cracking all the nurses and RTs up b/c they haven't heard him until now. He's on his home feeds now, done with the TPN. Yeah, my kid is a total butt-kicking rock star.
The plan from here? In rounds this morning I heard words like "move down to TCC" (transitional care unit) and "home maybe next week." Probably starting tomorrow we'll start to wean his pressure settings just a little. Then after a day or 2 of that, start windowing (taking small breaks off the bi-pap.) I'm very picky about windowing, imagine that, and he'll start out very, very slow. No way am I pushing him to spend time off that bi-pap. All in good time and I'll do everything I can to make sure his progress is nothing but forward, no sliding back after he's come this far.
That's it for now. Pretty darn good, eh? Dad is on his way here and Mom will go home for a day or 2. I'm not going to lie, I'm very tired. Whatever the adjective is that comes after tired, grumpy and exhausted, that's me. I knew once he came off the vent, that would be my time to totally kick into Super Mama status. I need to watch that everything is being done correctly, at the right times, and also watch Colby's overall behavior. Yeah, you thought I was particular before, you should see me now. I bet they can't wait to get us out of this PICU! Actually I think the staff here really likes SMA parents simply b/c we're knowledgeable for the most part on what's going on with our kiddos. We know the lingo and understand how it all relates. Never wish I had to be so damn smart about this crap, know what I mean Vern? Later, taters.
Thursday, September 22, 2011
SMILEY FACE, 2 THUMBS UP, HAPPY DANCE
I'll admit, this "e" is going better than I thought it would for Colby. It's been 32.5 hours and not the first little bobble. So woot woot, way to go sweet boy! He's on the same settings as when we pulled the tube. Fine with me. The main thing is we haven't had to go up on his settings. His oxygen, heart rate, pH and CO2 levels have remained stable so no need to make any pressure changes on the bi-pap. (Remember my if it ain't broke don't fix it attitude.) We have weaned his oxygen on the bi-pap to 30% and I hope to have him down to room air (21%) by morning. This shouldn't be a problem for Colby, usually never is. He's currently getting his cough treatments every 2.5 hours. His next one is due at 8:30 and after that I think we'll try to go every 3 hours overnight and tomorrow. He's going to remain on his broad spectrum antibiotics until we go home. Haven't really decided about the other 2. I would say he needs at least a 10-14 day course of each. His TPN is done and he's on his normal feeds now. It's all progress, progress, progress.
Colby has had a busy day, sort of. He got a bath this morning and we changed his bedding. We didn't mess with washing his hair, though, since he has on his bi-pap cap. The holistic therapist came and gave Colby a message. Yeah, he soaked it up like the little attention seeker he is haha. Hilarious. His heart rate was in the 80s and he was just jabbering away. Occupational therapy came and stretched him out from the waist up. Our family friend, Caryn, stopped by on her way to see her daughter.
I guess that's it for now. I'm so glad to be blogging happy news from Cincy. THANK YOU, THANK YOU, to all who have stuck by us during this mess. Your love, support and prayers are felt all the way up I-71. Right back at ya, peeps :-)
Colby has had a busy day, sort of. He got a bath this morning and we changed his bedding. We didn't mess with washing his hair, though, since he has on his bi-pap cap. The holistic therapist came and gave Colby a message. Yeah, he soaked it up like the little attention seeker he is haha. Hilarious. His heart rate was in the 80s and he was just jabbering away. Occupational therapy came and stretched him out from the waist up. Our family friend, Caryn, stopped by on her way to see her daughter.
I guess that's it for now. I'm so glad to be blogging happy news from Cincy. THANK YOU, THANK YOU, to all who have stuck by us during this mess. Your love, support and prayers are felt all the way up I-71. Right back at ya, peeps :-)
Wednesday, September 21, 2011
WONDERFUL WEDNESDAY
Colby is 12 hours, 42 minutes after extubation, not that I'm counting. Today has gone "textbook" I guess they would say, without a problem, a hitch, a worry or an "incident." Here are the stats: Colby's home bi-pap pressures are 21/7 with a backup rate of 20, on room air oxygen (21%.) We extubated him on 28/8 with a backup rate of 22, bleeding oxygen at 50% through the bi-pap. We've taken 3 blood gases; they all look great. Actually his CO2 is a little low, 29, and I can't believe they haven't said something to me about changing something on the vent. Like I'd agree to it anyway. Only thing we've changed is gradually taking the amount of oxygen that we bleed through his bi-pap down. It's currently on 30%. That's it, read my lips, NO OTHER CHANGES. So help me, if they come in here trying to change these settings I will beat someone senseless. Oh wait, touching his vent settings this early after "e" would already make them senseless, so maybe I could beat some sense into them instead. He'll get another blood gas at 4 a.m. and we'll reevaluate from there.
Our RT today, Tracy, is a freakin' rock star!! She did an amazing job with Colby. We had every little detail down and were ready to roll when "e" rolled around. She monitored Colby closely and he was never even a few minutes late for his treatments. She took EXCELLENT care of him today. I'm really glad. She's the 1 who extubated Colby the day it only last 20 minutes, so this was definitely a better day in the Colby/Tracy "e" storyline.
Colby looks good. He acts more like the Colby I'm used to seeing. His oxygen has not dropped below 98% and his heart rate hasn't been over 110. Most excellent! Something I learned (the hard way) from the last "e" is cough, cough, cough. We didn't give Colby enough cough treatments last time, but by golly, we're on top our game this time around. We started out doing tmts every hour for the first 3 hours, then moved to every 1.5 hours, etc. He finished his last cough tmt at 11:15 and Penny, another 1 of our fav RTs, will come back at 1:30/1:45 for his next tmt. We're also doing MetaNeb tmts every other along with the cough assist.
Like I've said before, Colby is not in the clear just yet. The first 48 hours are usually the most crucial for SMA kiddos after "e." However, I'm very, very pleased with his progress so far. This is one of the smoothest "e" experiences we've had to date. I hope to keep reporting good news/progression tomorrow.
Our RT today, Tracy, is a freakin' rock star!! She did an amazing job with Colby. We had every little detail down and were ready to roll when "e" rolled around. She monitored Colby closely and he was never even a few minutes late for his treatments. She took EXCELLENT care of him today. I'm really glad. She's the 1 who extubated Colby the day it only last 20 minutes, so this was definitely a better day in the Colby/Tracy "e" storyline.
Colby looks good. He acts more like the Colby I'm used to seeing. His oxygen has not dropped below 98% and his heart rate hasn't been over 110. Most excellent! Something I learned (the hard way) from the last "e" is cough, cough, cough. We didn't give Colby enough cough treatments last time, but by golly, we're on top our game this time around. We started out doing tmts every hour for the first 3 hours, then moved to every 1.5 hours, etc. He finished his last cough tmt at 11:15 and Penny, another 1 of our fav RTs, will come back at 1:30/1:45 for his next tmt. We're also doing MetaNeb tmts every other along with the cough assist.
Like I've said before, Colby is not in the clear just yet. The first 48 hours are usually the most crucial for SMA kiddos after "e." However, I'm very, very pleased with his progress so far. This is one of the smoothest "e" experiences we've had to date. I hope to keep reporting good news/progression tomorrow.
QUICK WEDNESDAY UPDATE
Colby is 4 hours, 45 minutes post extubation. He's a freaking rock star! No problems as of yet. No drops in oxygen, heart rate perfectly stable. CO2 levels great. He's not uncomfortable or belly breathing. He is tolerating his cough treatments well. He still has a loooooong way to go but so far we're very pleased. And yes, I can hear those faint little sounds he's making and it warms my heart to the nth degree. Hang in there, Colby. Just keep on keeping on. I'll post more good news tonight!!
Tuesday, September 20, 2011
IT'S ALMOST TIME - OH MY
In about 12 hours Colby will be extubated from that stinking vent for the 3rd time this hospital stay. I'll be able to look at his handsome, sweet face with no tape or tube. Within an hour of coming off the vent, he'll start jabbering again. Even though they'll be hoarse and weak, I can't wait to hear those Colby jabbers. That's the part I'm looking forward to tomorrow. You already know what I'm not looking forward to, another failed extubation. I just don't think I can watch him go through that again. Watching your kid struggle just to breathe is horrible. I'm scared, really, really scared of what might happen. Do I think he's ready? For the most part, yeah. I'm never fully sure just based on his past experiences at failed extubations. They are not pretty. However, we've identified his infections and are covering them with 3 different antibiotics. His secretions are more under control right now than they have been this whole stay. We have to try some time, so I say let's do this. I'm terrified for him. Absolutely petrified what will happen tomorrow. Colby will never know that, though. He already knows we're doing this. Tomorrow I'll just smile through the fear and encourage him to do his best. That's all we can ever ask of anyone, please just try your hardest. Did I mention I'm scared shitless? I want him off the vent so bad I can't stand it. I want him to breathe on his own again. Most of all, I want us to all GO HOME and get on with our lives.
SMA, you mean, horrible bastard, you've taken away yet another month of our lives. You've robbed my son of his 4th grade year. He got in a whopping 2 days of school before being hospitalized. You've taken my parents away from their homes, their relationships. Their lives have been put on hold, too, big time. You've prevented me from working. I've had to reschedule my thyroid surgery yet again. I miss my friends terribly. We've missed beautiful fall weather after having a miserably hot summer. We won't even begin to explain the emotional toll you've taken on all of us. I HATE YOU, SMA. I hate what you've done to Colby. I hate what you've done to my family. Colby just has to pull through this extubation because we will NOT let you win. We WILL get Colby home and we WILL move on with our lives.
I guess you can tell I'm a little on the emotional side at the moment. Cant' help it. I have my Extubation List printed out neatly, pinned up on the message board. One of our fav RT's will be taking care of Colby tomorrow. Colby's TPN will start at midnight. Not sure what else I can do to help him succeed tomorrow. It's gonna be what it's gonna be. Hey, guess what, there's a patron saint of lung and respiratory problems. Ha, can you believe it? St. Bernidino. Guess I'll be raising up a couple prayers to him, along with the Big Guy, tonight. I'll post tomorrow as soon as I get a chance. Thanks everyone for your continued support. Means a lot, it really does.
SMA, you mean, horrible bastard, you've taken away yet another month of our lives. You've robbed my son of his 4th grade year. He got in a whopping 2 days of school before being hospitalized. You've taken my parents away from their homes, their relationships. Their lives have been put on hold, too, big time. You've prevented me from working. I've had to reschedule my thyroid surgery yet again. I miss my friends terribly. We've missed beautiful fall weather after having a miserably hot summer. We won't even begin to explain the emotional toll you've taken on all of us. I HATE YOU, SMA. I hate what you've done to Colby. I hate what you've done to my family. Colby just has to pull through this extubation because we will NOT let you win. We WILL get Colby home and we WILL move on with our lives.
I guess you can tell I'm a little on the emotional side at the moment. Cant' help it. I have my Extubation List printed out neatly, pinned up on the message board. One of our fav RT's will be taking care of Colby tomorrow. Colby's TPN will start at midnight. Not sure what else I can do to help him succeed tomorrow. It's gonna be what it's gonna be. Hey, guess what, there's a patron saint of lung and respiratory problems. Ha, can you believe it? St. Bernidino. Guess I'll be raising up a couple prayers to him, along with the Big Guy, tonight. I'll post tomorrow as soon as I get a chance. Thanks everyone for your continued support. Means a lot, it really does.
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