We're HOME! Not for long, 3.5 days, but that's 3.5 days we're NOT in the hospital. Here's a summary of our crazy day yesterday.
The PLAN was to get discharged right after morning rounds, around 10:00/10:30. Guess what, that didn't happen. We waited, and waited. I kept my cool, though, really I did, for an hour or so. I told my parents, they have 15 minutes to get those discharge papers in here, or I swear we're walking out the damn door AMA. I think they listen to us in those rooms, because 2 minutes later our nurse comes in and says, got your papers! Then we had to wait on transport, new hospital policy. Huh?! That wasn't part of my PLAN. Long story short, we got a much later start than I had originally PLANNED. I wouldn't have minded so much except peeps from the new nursing agency were coming over at 3:00 to start that process. Got home, got Colby inside and put him in his bed, and knock, knock, the nursing agency was here early. That wasn't the PLAN at all!! The PLAN was to get Colby home, unpack the van, make his food and feed him/change him before the nursing agency got there. Okay, new PLAN. Dad had to unload the van by himself while Colby and I met new nursing agency person. While she's doing paperwork, I go to make Colby's food. No baby food. Well crap! Hey Dad, can you run to Kroger and get Colby some baby food so I can make his food for the day? Sure. You see how this is going. Eventually things calmed down. Colby got fed, got his cough treatment. Nursing agency got the info they needed. My stepdad came over and brought me a load of laundry they did for us, some supplies from the hospital I had sent home a week or so ago, and the best dang pulled pork I've ever had. Not sure what he did to it, but man it was good. He even made homemade BBQ and put that on the side. And brought buns. No, I'm not spoiled at all, no way. Spent the rest of the day settling in, unpacking supplies. Was right in the middle of changing Colby last night. Apparently he wasn't finished because he started peeing on everything, including me. Go ahead, chuckle, laugh, giggle, snort with delight at my expense. I can handle it. Hadn't PLANNED to change all his sheets, pads and blankets last night, but ended up doing it anyway, eh?
What are our PLANS today? Very little. Only thing I really want to do is keep Colby on schedule. So far, so good. Turned off his feeding at 7:00. Gave him his meds at 8:00. Getting ready to do cough treatment at 9:00. Amber is coming over later so we can do some programming on Colby's eye gaze. We need to give him some choices so he can pick out the theme he wants for his upcoming 10th birthday party! Anything else (unpacking, organizing, phone calls, rest, cleaning, etc) is just a bonus.
Off to get our Tuesday AT HOME started! Thanks for checking in on us. You can go back to your regularly scheduled PLANS now. Hope your PLANS go as PLANNED. If not, just do as we do and make new PLANS along the way. It's more fun that way!
Tuesday, June 19, 2012
Sunday, June 17, 2012
COME ON CLOCK, MOVE FASTER, PLEEEEASE
In just 17 hours or so, we will be heading HOME. Yee haw, I cannot wait.
The ex is here today doing his 12-hour day stay with Colby so we can get out of here. Last night I started thinking what in the crap am I going to do all day to keep me sane? Keep me from going over to the hosp to see Colby every hour on the hour? You're allowed to go over and visit here and there, but really he's supposed to do Colby's care all on his own. I stayed at Ronnie Donnie last night. Slept in this morning. That's the first time since we've been here this visit that I haven't set the alarm. Mom stayed with Colby last night and once the ex got there, she came over with me. (I have other various descriptives for the ex, but since I'm not really sure who all is reading this, we'll just stick with "ex" ok). Mom and I did the laundry. Then we went to brunch here at 10:30. Then we piddled around for a while and I thought oh what the heck, let's run out to Meijer. I had been there before on the Ronnie Donnie shuttle and had a general idea of where it was. Talked Mom into going, too. She could probably choke me now, what an adventure it turned out to be!
First of all, Mom's car has been having issues lately. Not starting issues. They've had it looked at several times, but the problem has still remained undiagnosed. Luckily, they had the foresight to buy one of those chargeable battery-charging thingys. Don't know what they're called, but it's darn handy if the damn car won't start! Like today! Got out the starter-thingy, got the car started and away we go to Meijer, about 5.5 miles away. Or when Mom and I try to get there, more like 15-20 miles! We got specific directions from Ronnie Donnie but guess what, their directions totally sucked! They were horrible directions. First it said go to I-71. Well guess what, I-71 splits into North and South, but the directions didn't say which one to take. Then directions said to get off on the M-something exit, can't remember the name. Well guess what, there is no exit off of 71 with that name. Trust us, we cruised up and down both I-71 North AND South, there is no such exit! Finally got directions and made it to Meijer. Got my Father's Day cards bought, along with some diet root beer. Mom bought Colby a couple new outfits. The child is growing like a weed, as we country folk say. Also trying to get Colby some button down or v-neck shirts. Seems like they would work better with his trach. While we're in the store, it starts to rain. No, not rain, freakin' pour. Mom and I were like oh fantastic, sure hope the car starts this time. By the time we got checked out, got good directions back to the hospital and went outside, it had stopped raining. Thank goodness. But did her car start, nope. So we got the charger thingy out of the trunk, again, and got the car going. What an adventure, but hey, we killed a good 3 hours or so with that excursion.
Got back to Ronnie Donnie, dropped off our Meijer purchases. Went to go see Colby and pack up some stuff at the hospital to send home with the ex. Now we're back at Ronnie Donnie and the real challenge begins. Waiting, waiting, waiting to get the hell out of here. The ex still has 3 hours left on his stay. At 8:00 I'll go over and do another trach change for Colby. Since my last 2 weren't all that easy-peasy, I asked if I could do another one while we were still in the hospital. I'll stay at Ronnie Donnie tonight, along with one of my parents. My dad is on his way up as we speak with the Terdmobile so we can get home in the morning. The other grandparent will stay with sweet Colby boy tonight.
We're SUPPOSED to get out of here early tomorrow morning, right after rounds, like 10:00/10:30. Trust me, I'll have everything we need packed and ready. Colby and I will be dressed and ready to go no later than 9:50 a.m. haha. For the love of cheese, just let us go HOME, please, please, please.
Going to wrap this up now and go find something else to do until 7:50 p.m. when I can head to the hosp to spend some QT with Colby. Tick tock. Tick tock. Just have to hang on a little longer, about 16 hours and 40 minutes I'm thinking.
The ex is here today doing his 12-hour day stay with Colby so we can get out of here. Last night I started thinking what in the crap am I going to do all day to keep me sane? Keep me from going over to the hosp to see Colby every hour on the hour? You're allowed to go over and visit here and there, but really he's supposed to do Colby's care all on his own. I stayed at Ronnie Donnie last night. Slept in this morning. That's the first time since we've been here this visit that I haven't set the alarm. Mom stayed with Colby last night and once the ex got there, she came over with me. (I have other various descriptives for the ex, but since I'm not really sure who all is reading this, we'll just stick with "ex" ok). Mom and I did the laundry. Then we went to brunch here at 10:30. Then we piddled around for a while and I thought oh what the heck, let's run out to Meijer. I had been there before on the Ronnie Donnie shuttle and had a general idea of where it was. Talked Mom into going, too. She could probably choke me now, what an adventure it turned out to be!
First of all, Mom's car has been having issues lately. Not starting issues. They've had it looked at several times, but the problem has still remained undiagnosed. Luckily, they had the foresight to buy one of those chargeable battery-charging thingys. Don't know what they're called, but it's darn handy if the damn car won't start! Like today! Got out the starter-thingy, got the car started and away we go to Meijer, about 5.5 miles away. Or when Mom and I try to get there, more like 15-20 miles! We got specific directions from Ronnie Donnie but guess what, their directions totally sucked! They were horrible directions. First it said go to I-71. Well guess what, I-71 splits into North and South, but the directions didn't say which one to take. Then directions said to get off on the M-something exit, can't remember the name. Well guess what, there is no exit off of 71 with that name. Trust us, we cruised up and down both I-71 North AND South, there is no such exit! Finally got directions and made it to Meijer. Got my Father's Day cards bought, along with some diet root beer. Mom bought Colby a couple new outfits. The child is growing like a weed, as we country folk say. Also trying to get Colby some button down or v-neck shirts. Seems like they would work better with his trach. While we're in the store, it starts to rain. No, not rain, freakin' pour. Mom and I were like oh fantastic, sure hope the car starts this time. By the time we got checked out, got good directions back to the hospital and went outside, it had stopped raining. Thank goodness. But did her car start, nope. So we got the charger thingy out of the trunk, again, and got the car going. What an adventure, but hey, we killed a good 3 hours or so with that excursion.
Got back to Ronnie Donnie, dropped off our Meijer purchases. Went to go see Colby and pack up some stuff at the hospital to send home with the ex. Now we're back at Ronnie Donnie and the real challenge begins. Waiting, waiting, waiting to get the hell out of here. The ex still has 3 hours left on his stay. At 8:00 I'll go over and do another trach change for Colby. Since my last 2 weren't all that easy-peasy, I asked if I could do another one while we were still in the hospital. I'll stay at Ronnie Donnie tonight, along with one of my parents. My dad is on his way up as we speak with the Terdmobile so we can get home in the morning. The other grandparent will stay with sweet Colby boy tonight.
We're SUPPOSED to get out of here early tomorrow morning, right after rounds, like 10:00/10:30. Trust me, I'll have everything we need packed and ready. Colby and I will be dressed and ready to go no later than 9:50 a.m. haha. For the love of cheese, just let us go HOME, please, please, please.
Going to wrap this up now and go find something else to do until 7:50 p.m. when I can head to the hosp to spend some QT with Colby. Tick tock. Tick tock. Just have to hang on a little longer, about 16 hours and 40 minutes I'm thinking.
Thursday, June 14, 2012
CONTROL ISSUES
Couldn't sleep last night, which makes sense since I was in a noisy, overly-lit hospital room on a pitiful excuse for a couch/foldout bed. But my mind was churning and churning about how I could get myself over this funk I'm in. Then I figured out my problem, I'm having control issues, as in no control. I have no control over the TCC's policy on trach training/education. I certainly have no control on the actions and words of my ex-husband. I've never had any control on the effects stupid f-in SMA has on Colby's body. Just exactly what do I have control of currently? My attitude, and that's about it. So I decided to work on it today, and that's just what I'm doing. Turning that frown upside down kind of stuff.
Got up at 7:00 and took a shower before Colby was up. And oops, realized all my clean clothes were over at Ronnie Donnie. Did I get mad and frustrated, heck no, just laughed about it. Put my dirty clothes on my clean body, now I'm at Ronnie Donnie to get clean ones. No big deal. Then my mom, the Queen of Questions called. In true style, she asked me 8 questions in our 4-minute phone conversation. No reason to get upset about this. It's a good thing! It means she loves us, cares for us, and wants to make sure we're doing okay. Tonight the ex will be here to do a trach change and do his overnight 12-hour stay with Colby. Am I going to worry about it, or get upset over having to deal with him? Absolutely not. I'll stay there for the trach change. I want to see how that goes. Then I get to leave. No one can stay with you while you're doing your stays, you have to do everything yourself. He'll be fine. Colby will be fine. And if he has any questions or concerns, that's why the nurses and RTs are there. I'll be out going for a walk and hanging out at Ronnie Donnie I guess.
The way I see it, in about 100 hours from now we'll be home. Did you hear me, I said HOME?! Let the countdown begin. We (I) can do this. Just going to stay busy. Tie up loose ends around here. Make sure duckies are in a row to go home and bing, bang, boom, Bob's your uncle, we'll be home before you know it. Not going to worry about getting back here 3.5 days after that. Right now just concentrate on the good, Colby is well enough to go home and we are headed in that direction.
Colby is having an okay morning so far. He was off the vent for a window and I had to suction his trach twice. Not sure what that's about, because usually we don't have to suction it that often. When I get back to Ronnie Donnie we'll try another window and see if it's better. It's gorgeous outside so yeah, I think we need to get him up in his chair and out to the roof garden so we can blow some bubbles!
Going to go put on my clean clothes now. Then take Colby's clean clothes over and get him dressed for the day. I'll keep you posted on the cheery, good attitude stuff. I think I can, I think I can.
Got up at 7:00 and took a shower before Colby was up. And oops, realized all my clean clothes were over at Ronnie Donnie. Did I get mad and frustrated, heck no, just laughed about it. Put my dirty clothes on my clean body, now I'm at Ronnie Donnie to get clean ones. No big deal. Then my mom, the Queen of Questions called. In true style, she asked me 8 questions in our 4-minute phone conversation. No reason to get upset about this. It's a good thing! It means she loves us, cares for us, and wants to make sure we're doing okay. Tonight the ex will be here to do a trach change and do his overnight 12-hour stay with Colby. Am I going to worry about it, or get upset over having to deal with him? Absolutely not. I'll stay there for the trach change. I want to see how that goes. Then I get to leave. No one can stay with you while you're doing your stays, you have to do everything yourself. He'll be fine. Colby will be fine. And if he has any questions or concerns, that's why the nurses and RTs are there. I'll be out going for a walk and hanging out at Ronnie Donnie I guess.
The way I see it, in about 100 hours from now we'll be home. Did you hear me, I said HOME?! Let the countdown begin. We (I) can do this. Just going to stay busy. Tie up loose ends around here. Make sure duckies are in a row to go home and bing, bang, boom, Bob's your uncle, we'll be home before you know it. Not going to worry about getting back here 3.5 days after that. Right now just concentrate on the good, Colby is well enough to go home and we are headed in that direction.
Colby is having an okay morning so far. He was off the vent for a window and I had to suction his trach twice. Not sure what that's about, because usually we don't have to suction it that often. When I get back to Ronnie Donnie we'll try another window and see if it's better. It's gorgeous outside so yeah, I think we need to get him up in his chair and out to the roof garden so we can blow some bubbles!
Going to go put on my clean clothes now. Then take Colby's clean clothes over and get him dressed for the day. I'll keep you posted on the cheery, good attitude stuff. I think I can, I think I can.
Wednesday, June 13, 2012
COLBY GOOD, MAMA SO-SO
Colby is wearing a t-shirt today that his BFF Amber got him. It reads, "This kid is awesome!" and has two thumbs up on it. How perfect is that? Because yes, Colby is awesome, and has been doing awesomely awesome with his trach. Today we gave him a bath (long overdue) and changed his bed linens. He took an almost 3-hour window off his vent. He tried his PMV inline for 25 minutes. Took him out to the roof garden for some fresh air. Holistic Therapy came and gave him a massage. Now he's getting his cough treatment and watching some SBob. Quite the busy boy, isn't he?
I'm done with all my trach training/education. The only thing keeping us here is the ex getting up here and finishing his. I spent over half an hour with him on the phone the other day, and we worked out a schedule where he could get his training done and we could get home this weekend. That's simply fabulous, right? Wrong! Hospital policy says he can't do this part of his training before he does that part of his training. Well shit. So then I had to call him back and now we're trying to figure out something else. Plus the nursing agency (we're switching) won't come out on the weekend to do a new patient assessment/care plan. So as of this moment, we're planning on getting out of here Monday morning, early, like 10 a.m., provided Colby's dad gets up here and gets the rest of his trach stuff done. He came up last night to do a trach change and a couple other little things on his sheet. As you know, trach changes have not been going well. The RT last night put a huge pillow under Colby's shoulders and really got his neck hyper extended. Poof, the new trach went right in. Guess that's what we've been doing wrong, along with being a little hesitant to keep putting the trach in even though we feel resistance. Apparently once you feel resistance, you need to "aim up", "hook it like a C", "move your wrist like shooting a basketball". Whatever. You can give us all the advice in the world, but until we've done it several times and it becomes more natural, we're going to struggle a little. Ah yes, nothing like inserting a plastic breathing tube in your son's throat! Don't get me wrong. I don't regret the trach, not for 1 second. But trach changes are for the birds.
When Amber came up yesterday for a visit, she and I hit Chipotle for lunch, of course. We've been here 3 weeks and I've been there 3 times :-) My tummy paid for it the rest of the night, but it was well worth it. I think I'm a prime candidate for a nap this afternoon. Maybe I'll snuggle up with Colby and we'll have "quiet time", which usually involves me falling asleep and Colby staying awake and pissed for an hour. He might go to sleep though, after his relaxing massage.
What is wrong with me? I mean what is wrong with me more than usual?! I'm in a bad mood. Horribly bitchy mood as a matter of fact. I just want everybody to GO AWAY. Or maybe I just want to RUN AWAY. I have no right to feel this way. For once, we are in the hospital for something good. I don't regret getting Colby's trach. He's doing fabulously fabulous since trach surgery. We've made "friends" with the TCC staff. We've been able to visit with other SMA families that are here on the unit. I'm surrounded by people who are trying to help. Don't know if I'm overcome with frustration of wanting to get home, even if only for a few days, or total boredom. Don't know if we've just flat out spent too much time in this hospital over the last several months, or if I'm a total grumpyass. Or maybe it's knowing we have to turn around and come right back up here for the BTT (bronch, teeth, testicles) procedures, then in a few months return for spine surgery. I don't know. I know people have called and I haven't called you back. I'm sorry. I know my BFF's have had to get my complaining, whiny texts. I'm sorry. Thanks for the encouraging words. We'll be home soon to tray and figure out our new post-trach normalcy. Hopefully my usual pleasant, unoffensive, sweet, kind demeanor will return shortly. (Why are you laughing?!)
I'm done with all my trach training/education. The only thing keeping us here is the ex getting up here and finishing his. I spent over half an hour with him on the phone the other day, and we worked out a schedule where he could get his training done and we could get home this weekend. That's simply fabulous, right? Wrong! Hospital policy says he can't do this part of his training before he does that part of his training. Well shit. So then I had to call him back and now we're trying to figure out something else. Plus the nursing agency (we're switching) won't come out on the weekend to do a new patient assessment/care plan. So as of this moment, we're planning on getting out of here Monday morning, early, like 10 a.m., provided Colby's dad gets up here and gets the rest of his trach stuff done. He came up last night to do a trach change and a couple other little things on his sheet. As you know, trach changes have not been going well. The RT last night put a huge pillow under Colby's shoulders and really got his neck hyper extended. Poof, the new trach went right in. Guess that's what we've been doing wrong, along with being a little hesitant to keep putting the trach in even though we feel resistance. Apparently once you feel resistance, you need to "aim up", "hook it like a C", "move your wrist like shooting a basketball". Whatever. You can give us all the advice in the world, but until we've done it several times and it becomes more natural, we're going to struggle a little. Ah yes, nothing like inserting a plastic breathing tube in your son's throat! Don't get me wrong. I don't regret the trach, not for 1 second. But trach changes are for the birds.
When Amber came up yesterday for a visit, she and I hit Chipotle for lunch, of course. We've been here 3 weeks and I've been there 3 times :-) My tummy paid for it the rest of the night, but it was well worth it. I think I'm a prime candidate for a nap this afternoon. Maybe I'll snuggle up with Colby and we'll have "quiet time", which usually involves me falling asleep and Colby staying awake and pissed for an hour. He might go to sleep though, after his relaxing massage.
What is wrong with me? I mean what is wrong with me more than usual?! I'm in a bad mood. Horribly bitchy mood as a matter of fact. I just want everybody to GO AWAY. Or maybe I just want to RUN AWAY. I have no right to feel this way. For once, we are in the hospital for something good. I don't regret getting Colby's trach. He's doing fabulously fabulous since trach surgery. We've made "friends" with the TCC staff. We've been able to visit with other SMA families that are here on the unit. I'm surrounded by people who are trying to help. Don't know if I'm overcome with frustration of wanting to get home, even if only for a few days, or total boredom. Don't know if we've just flat out spent too much time in this hospital over the last several months, or if I'm a total grumpyass. Or maybe it's knowing we have to turn around and come right back up here for the BTT (bronch, teeth, testicles) procedures, then in a few months return for spine surgery. I don't know. I know people have called and I haven't called you back. I'm sorry. I know my BFF's have had to get my complaining, whiny texts. I'm sorry. Thanks for the encouraging words. We'll be home soon to tray and figure out our new post-trach normalcy. Hopefully my usual pleasant, unoffensive, sweet, kind demeanor will return shortly. (Why are you laughing?!)
Friday, June 8, 2012
TGIF - YEAH NOT REALLY
Here are several adjectives used to describe Colby lately: awesome, fabulous, looks great, handsome, rock star, kicking butt and/or ass, trooper, strong, fighter, super fantastic just like his mama (my personal favorite), big boy. He really is doing well post trach surgery. I'm not sure he's convinced the trach is such a wise move, but over time I hope he sees the benefits. We did get some poo-poo news, however. Colby's DEXA scan results were -4.1. Normal range is +2 to -2. Colby has always had issues with osteopenia. Most SMA non-weight bearing kids have issues with bone density, fractures, etc. We've informed neurology and also have asked for a consult from endocrinology. If Colby does need to be on a daily calcium/bone-strengthening medication, or if he needs injections 3x or 4x a year, endo would be the group to follow Colby with that. It's not that big of a deal. I'm very thankful that as of today, Colby has never had a bone fracture. But I've been in the pissiest of moods since getting his results. Why I'm not really sure. First of all, I'm not sure this -4.1 is that much worse than his last DEXA scan results. Can't remember offhand his last results. Secondly, this is extremely common in the SMA community for our kiddos, so why would Colby not be affected, too? Guess it's the whole, oh great, just 1 more damn thing to worry about mentality. Colby list of medications and supplements seems to be growing and growing lately.
Colby did well with his windows yesterday. He came off the vent 5 different times for a total of about 4.5 hours. He has already had a 1-hour window today also. When I get back to his room, we'll try another. He had a pressure sore on his left ear last week. He hasn't had one of those in years, literally. My guess is somehow his ear got pinched and formed a blister. Well anyways, it looks 100% better now. Calmoseptine is the bomb, baby. Colby looks so darn cute today in his black gym shorts and Indiana University Athletics shirt. Also going to try and sit him up in his chair later. Yes, will use the lift!
So I need to snap out of this foul mood I'm in. Hit me last night I haven't been able to shake it. Yeah, gee, I wonder why. Guess it has nothing to do with being in a hospital for the last 20 days or so. It's hard being in a hospital when your kid is really sick. It's also hard being in a hospital when your kid isn't so sick. My eyes are on fire. I've been wearing my glasses all day, which I never do. The air is so dry in Colby's room, I'm constantly putting in eye drops. Plus I'm bored out of my freakin' mind. Finished reading the Old Testament last night. I have a 1-year Bible where you're supposed to do readings from the Old Testament, New Testaments, Psalms and Proverbs daily and be done reading the Bible in 1 year. Yeah well, it's only taken me 2 years, 6 months and 8 days to get through the Old Testament only, but by golly I did it! Not in any hurry to start the New Testament, though. Think I'll read the 3rd Hunger Games book first, lol.
I'll do my CPR training today, that'll kill some time. Then I'll need to do my 24-hour stay with Colby. That's where I completely take care of Colby, give him meds, feed him, do his respiratory treatments, change him, etc. Think I'll be able to handle that, haha. They let you divide it up into two 12-hour shifts if you want. I'm going to see if they'll let me do 7 p.m. tonight to 7 a.m. tomorrow morning. Once my 24-hour stay is done, I think my trach training/education will be complete. The real challenge lies in getting Colby's dad up here to finish his. He's coming up Saturday night to do training, spending the night, doing more training Sunday morning. He's going to have to switch gears and get it done so we can go HOME for a few days before Colby's procedures on June 22 (BTT-bronch, teeth, testicles).
Well, I've yammered on long enough. More later.
Colby did well with his windows yesterday. He came off the vent 5 different times for a total of about 4.5 hours. He has already had a 1-hour window today also. When I get back to his room, we'll try another. He had a pressure sore on his left ear last week. He hasn't had one of those in years, literally. My guess is somehow his ear got pinched and formed a blister. Well anyways, it looks 100% better now. Calmoseptine is the bomb, baby. Colby looks so darn cute today in his black gym shorts and Indiana University Athletics shirt. Also going to try and sit him up in his chair later. Yes, will use the lift!
So I need to snap out of this foul mood I'm in. Hit me last night I haven't been able to shake it. Yeah, gee, I wonder why. Guess it has nothing to do with being in a hospital for the last 20 days or so. It's hard being in a hospital when your kid is really sick. It's also hard being in a hospital when your kid isn't so sick. My eyes are on fire. I've been wearing my glasses all day, which I never do. The air is so dry in Colby's room, I'm constantly putting in eye drops. Plus I'm bored out of my freakin' mind. Finished reading the Old Testament last night. I have a 1-year Bible where you're supposed to do readings from the Old Testament, New Testaments, Psalms and Proverbs daily and be done reading the Bible in 1 year. Yeah well, it's only taken me 2 years, 6 months and 8 days to get through the Old Testament only, but by golly I did it! Not in any hurry to start the New Testament, though. Think I'll read the 3rd Hunger Games book first, lol.
I'll do my CPR training today, that'll kill some time. Then I'll need to do my 24-hour stay with Colby. That's where I completely take care of Colby, give him meds, feed him, do his respiratory treatments, change him, etc. Think I'll be able to handle that, haha. They let you divide it up into two 12-hour shifts if you want. I'm going to see if they'll let me do 7 p.m. tonight to 7 a.m. tomorrow morning. Once my 24-hour stay is done, I think my trach training/education will be complete. The real challenge lies in getting Colby's dad up here to finish his. He's coming up Saturday night to do training, spending the night, doing more training Sunday morning. He's going to have to switch gears and get it done so we can go HOME for a few days before Colby's procedures on June 22 (BTT-bronch, teeth, testicles).
Well, I've yammered on long enough. More later.
Wednesday, June 6, 2012
ALL GOOD IN TCC
Did my 3rd and final trach change for Colby today. Well, the final one until we go home, then I'll have to change it out every 2 weeks. Without extra nurses and RTs around, gasp! It went smoothly, uneventful you might say! I just kept smiling at Colby, saying hey no problem, Mama's got this. Dancing around like I was all pumped up to do it. On the inside I was not dancing around, more like having a nervous meltdown. I had all the confidence in the world until the 2nd trach change, then my trach-changing confidence went in the toilet. So thankful it went ok today. ENT decided Colby has a bit of a "keyhole" deformity around his trach, an area at the bottom that is much smaller than the stoma. Basically that means "aim high and back" when doing the trach change. Just what I need, more instructions and complications on a process I'm not totally comfortable doing in the 1st place. Oh well, I'm sure I'll get better as time goes by.
In other exciting TCC news, oh wait, there isn't any exciting news to report. The PT gals that come to see Colby FINALLY convinced me to try the lift system they have here in the hospital. They kept blabbering on about how easy it was to use, yeah yeah. Hate to admit it, but they were right. Of course it's like 100x nicer than that crap lift we have at home. Wrapped Colby up in that sling and bing, bang, boom, glided him right into his power chair. Easy to get him out, too. They're like, you really have to start using a lift at home. He's too big, he's too tall. You'll hurt yourself. You'll drop and hurt him. Oh gee gals, guess I've never heard that blah blah before. I know they're right. I also know I don't like to admit I need one more piece of equipment to help me care for Colby. I'm at least strongly considering dragging out that lift when we get home. Puts strain on my neck and shoulders when I pick Colby up, especially when he's wearing his back brace. Can't imagine why, he only weighs somewhere around 70 pounds I bet. Yeah, stubborn mama, time to shift gears on that issue.
I tried beets for the 1st time in my life. That's thrilling to hear, huh? I just could never get past the look of them. Dad had some of his salad so I tried a bite. My exact words, "Tastes like dirt." Then he tasted them and said, "Yeah, these aren't very good beets." Ha! Guess most of the time they're pickled, but these were just plain. I'm eating supper here at Ronnie Donnie, then sending Dad over to eat.
Colby has done 2 windows today, 45 minutes and 30 minutes. When I get back over to Ronnie Donnie, we'll try another. I asked him this morning if he was getting used to his trach yet, he answered no. Fantastic. I'm hoping he was just pulling my chain. I know it's easier for him to breathe, and sit up. I know it has to feel better not having a cap on his head or mask on his face. Right? Is he mad at me for doing this? Does he not fully understand how this is helping him? Is he just tired of being in the hospital and having strangers up in his face all the time? Is it none of the above? I'm not sure. Going to talk to him some more about it. I know this trach is best for Colby. I hope one day he understands why he has it.
Well, they just made the announcement supper is ready. I'd better go get in line. You wouldn't believe how a free meal brings people out of the woodwork! Got to get it while the gettin's good! Bye all.
In other exciting TCC news, oh wait, there isn't any exciting news to report. The PT gals that come to see Colby FINALLY convinced me to try the lift system they have here in the hospital. They kept blabbering on about how easy it was to use, yeah yeah. Hate to admit it, but they were right. Of course it's like 100x nicer than that crap lift we have at home. Wrapped Colby up in that sling and bing, bang, boom, glided him right into his power chair. Easy to get him out, too. They're like, you really have to start using a lift at home. He's too big, he's too tall. You'll hurt yourself. You'll drop and hurt him. Oh gee gals, guess I've never heard that blah blah before. I know they're right. I also know I don't like to admit I need one more piece of equipment to help me care for Colby. I'm at least strongly considering dragging out that lift when we get home. Puts strain on my neck and shoulders when I pick Colby up, especially when he's wearing his back brace. Can't imagine why, he only weighs somewhere around 70 pounds I bet. Yeah, stubborn mama, time to shift gears on that issue.
I tried beets for the 1st time in my life. That's thrilling to hear, huh? I just could never get past the look of them. Dad had some of his salad so I tried a bite. My exact words, "Tastes like dirt." Then he tasted them and said, "Yeah, these aren't very good beets." Ha! Guess most of the time they're pickled, but these were just plain. I'm eating supper here at Ronnie Donnie, then sending Dad over to eat.
Colby has done 2 windows today, 45 minutes and 30 minutes. When I get back over to Ronnie Donnie, we'll try another. I asked him this morning if he was getting used to his trach yet, he answered no. Fantastic. I'm hoping he was just pulling my chain. I know it's easier for him to breathe, and sit up. I know it has to feel better not having a cap on his head or mask on his face. Right? Is he mad at me for doing this? Does he not fully understand how this is helping him? Is he just tired of being in the hospital and having strangers up in his face all the time? Is it none of the above? I'm not sure. Going to talk to him some more about it. I know this trach is best for Colby. I hope one day he understands why he has it.
Well, they just made the announcement supper is ready. I'd better go get in line. You wouldn't believe how a free meal brings people out of the woodwork! Got to get it while the gettin's good! Bye all.
Monday, June 4, 2012
TOLD YA SO - TODAY IS BETTER
Today has gone MUCH better than yesterday, thank you very much. After rounds ENT came up and they were able to get Colby's original size trach (5.5) back in, easy peasy. No one can really say what the problem was yesterday. Now I totally get why you need to do some trach changes while still in the hospital. If that chaos had to happen, I'm thankful it was in an environment where I had lots of help. Gee, I'm so doubly excited to do his next trach change now, NOT! TDB, it has to be done. So, using one of my famous (or infamous lines) just suck it up and do it! We got Colby up in his chair today for about 1.5 hours. Took him outside to the roof garden, and he spent about 45 minutes of that OFF the vent. As my BFF Beth would say, Colby is a stud!
And there you have it, the summary of our day so far. I'm getting ready to go for a walk before having supper at Ronnie Donnie (RD). Mom is with Colby right now. I think she'll stay with Colby tonight and I'll stay at RD. Now that all that craziness from yesterday has subsided, I think he's just fine. The people in the room next to us here at RD are from Macedonia. Like I said, can you imagine travelling that far to get your child the medical treatment they needed? And trust me, their English ain't no good neither, haha. I've been catching up with my Romanian friend, too. His son is doing quite well, although they still have he thinks another year or so to go for Benji's treatment. Again, I simply can't imagine. I about lose my marbles after 30 days.
Today marks 2 weeks we've been here, tomorrow starts week #3. Overall I'm very pleased with how everything has played out. Colby looks fabulous. Besides a couple snafoos, he has done most excellent with this whole trach experience. And let's face it, we wouldn't be us if we didn't have snafoos, that's just not how we roll, haha. Finally got his RT to losen up a little bit. He's been shy and quiet the last few times he's been with Colby. You don't that won't fly around me. Then found out he went to college in Louisville, so we finally had something to talk about and now he'll talk to us while doing Colby's cough treatment instead of standing there like a bump on a log.
Very fortunate to have my parents with us up here. Sometimes I think, I just need everyone to leave Colby and me the hell alone. Go away now, please. But seriously, where would I be without them? Stuck in that tiny hospital room by myself with Colby, never able to leave. Never able to go for a walk or spend the night at RD. I would be completely nuts. If I step back and look in, this stay really isn't that bad (so far). The day of Colby's surgery while we were in the waiting room, I had my dad on my left and my mom and stepdad on my right. Colby's surgery was being done by one of the best ENT doctors in the country at one of the best hospitals. Really, what more could I ask for? That's how I'm able to do what I do for Colby. My family and friends mean so much to me. They've stuck with us through good and bad over the years and PLEASE KNOW WE LOVE YOU AND APPRECIATE YOU SO VERY MUCH. Okay, gotta get my walk in before supper is served. Are you all still dropping your change in the Ronnie Donnie House buckets when you're picking up your Big Macs and McGriddles? Hope so. Ronald McDonald House is a wonderful organization that helps who knows how many families with sick children from all over the world. I know the difference they've made in our lives and we only live 2 hours away. This place has been a blessing for sure!
And there you have it, the summary of our day so far. I'm getting ready to go for a walk before having supper at Ronnie Donnie (RD). Mom is with Colby right now. I think she'll stay with Colby tonight and I'll stay at RD. Now that all that craziness from yesterday has subsided, I think he's just fine. The people in the room next to us here at RD are from Macedonia. Like I said, can you imagine travelling that far to get your child the medical treatment they needed? And trust me, their English ain't no good neither, haha. I've been catching up with my Romanian friend, too. His son is doing quite well, although they still have he thinks another year or so to go for Benji's treatment. Again, I simply can't imagine. I about lose my marbles after 30 days.
Today marks 2 weeks we've been here, tomorrow starts week #3. Overall I'm very pleased with how everything has played out. Colby looks fabulous. Besides a couple snafoos, he has done most excellent with this whole trach experience. And let's face it, we wouldn't be us if we didn't have snafoos, that's just not how we roll, haha. Finally got his RT to losen up a little bit. He's been shy and quiet the last few times he's been with Colby. You don't that won't fly around me. Then found out he went to college in Louisville, so we finally had something to talk about and now he'll talk to us while doing Colby's cough treatment instead of standing there like a bump on a log.
Very fortunate to have my parents with us up here. Sometimes I think, I just need everyone to leave Colby and me the hell alone. Go away now, please. But seriously, where would I be without them? Stuck in that tiny hospital room by myself with Colby, never able to leave. Never able to go for a walk or spend the night at RD. I would be completely nuts. If I step back and look in, this stay really isn't that bad (so far). The day of Colby's surgery while we were in the waiting room, I had my dad on my left and my mom and stepdad on my right. Colby's surgery was being done by one of the best ENT doctors in the country at one of the best hospitals. Really, what more could I ask for? That's how I'm able to do what I do for Colby. My family and friends mean so much to me. They've stuck with us through good and bad over the years and PLEASE KNOW WE LOVE YOU AND APPRECIATE YOU SO VERY MUCH. Okay, gotta get my walk in before supper is served. Are you all still dropping your change in the Ronnie Donnie House buckets when you're picking up your Big Macs and McGriddles? Hope so. Ronald McDonald House is a wonderful organization that helps who knows how many families with sick children from all over the world. I know the difference they've made in our lives and we only live 2 hours away. This place has been a blessing for sure!
Sunday, June 3, 2012
WELL THAT KINDA SUCKED
Friday, weeeeeee, fun day, well as fun as it gets around here. BFF Amy, Chelsea and Chase came up. We had lunch at Chipotle (my new fav) then just hung out for a while. Thanks peeps for coming to see us. We love company! Yesterday, weeeeeeeee, fun day, got Colby outside for the 1st time since we've been here. Then today was a total pisser :-( The ex came up and started his trach education/training. Actually he did pretty good. He has to watch a trach change before he can do one. So the plan was for me to do my 2nd trach change, have him watch, then he can come up through the week and do his 1st. We were just trucking along, everything was dandy. I had done Colby's IPV and cough treatments by myself this morning, was feeling pretty darn confident. Had all my trach supplies lined up. Easy peasy, just like the 1st trach change, right? WRONG, VERY WRONG. Hell no it didn't go that way. I couldn't get the trach in, it just wouldn't glide in the way it's supposed to. So the nurse starts bagging Colby and we get another RT in to help. She couldn't get the trach to go in either. Then another RT comes in and she was able to get a size smaller trach into Colby's stoma. So there you have it, our 1st emergency situation with Colby and his trach. Luckily I didn't panic, and the nurse was excellent. Colby's oxygen only dropped to 78/77 and considering he had NOTHING in his airway to help him breathe, she did a great job bagging him. We're not really sure what happened, could be a number of things. He could have had a mucous plug that was preventing the trach from gliding in. He could have tissue that isn't healing properly. Hard to say. They're going to leave the smaller trach in for today/tonight. There has been enough trauma to Colby's airway today, thank you very much. Then in rounds tomorrow we'll talk about what to do next and when we can try and change Colby's trach again. Yep, that's my sweet boy, keeping it interesting here in the TCC.
Not much else going on today. It's such beautiful weather I wish we could get Colby outside. But I think he's been through enough today so that will have to wait a bit. The GOOD NEWS is that Colby took a 45-minute window off the vent this morning before all that other crap happened. WAY TO GO COLBY, YOU AWESOMELY AWESOME KIDDO! I'm going to focus on that instead of the bump we hit with the trach change today. However, I will say this. It doesn't matter how many times you see it, how many years you've dealt with it, you never, ever, never get used to watching your kid struggle to breathe. When that oxygen monitor turns red and starts to beep, and the color drains out of Colby's face, there is a feeling that sits in the pit of your stomach that's hard to explain. You have to experience it to know what I'm talking about. Just like I wouldn't know what it's like to watch a kid have a seizure or go through chemo. You have to live it to know it, and trust me, you don't want to know what I know. All I can think is, he's okay. They said I did everything right. Nothing I did caused Colby's airway to collapse, close, etc. It was (hopefully) just a freak thing and the next trach change we have will be smooooooooth sailing. If not, somebody's going to have to make a road trip to Cincy and bring me one of those large mocha, valium, Xanax, vodka, caramel, rum lattes! Make it an extra large! And a dozen Krispy Kremes and a gallon of Ben and Jerry's. Hope it doesn't come to that, but just in case, who's volunteering?!
I went for a nice long walk. Now I'm at Ronnie Donnie. Going to eat supper, then head back to see kid. Mom is here with us now. Not sure which one of us is staying with Colby and which one is staying at Ronnie Donnie. Wanted to keep everyone posted on our excitement for the day! Here's hoping to no more exciting trach changes, only UNEVENTFUL ones. Tomorrow will be a better day, because I said so dammit, that's why!! Adios for now.
Not much else going on today. It's such beautiful weather I wish we could get Colby outside. But I think he's been through enough today so that will have to wait a bit. The GOOD NEWS is that Colby took a 45-minute window off the vent this morning before all that other crap happened. WAY TO GO COLBY, YOU AWESOMELY AWESOME KIDDO! I'm going to focus on that instead of the bump we hit with the trach change today. However, I will say this. It doesn't matter how many times you see it, how many years you've dealt with it, you never, ever, never get used to watching your kid struggle to breathe. When that oxygen monitor turns red and starts to beep, and the color drains out of Colby's face, there is a feeling that sits in the pit of your stomach that's hard to explain. You have to experience it to know what I'm talking about. Just like I wouldn't know what it's like to watch a kid have a seizure or go through chemo. You have to live it to know it, and trust me, you don't want to know what I know. All I can think is, he's okay. They said I did everything right. Nothing I did caused Colby's airway to collapse, close, etc. It was (hopefully) just a freak thing and the next trach change we have will be smooooooooth sailing. If not, somebody's going to have to make a road trip to Cincy and bring me one of those large mocha, valium, Xanax, vodka, caramel, rum lattes! Make it an extra large! And a dozen Krispy Kremes and a gallon of Ben and Jerry's. Hope it doesn't come to that, but just in case, who's volunteering?!
I went for a nice long walk. Now I'm at Ronnie Donnie. Going to eat supper, then head back to see kid. Mom is here with us now. Not sure which one of us is staying with Colby and which one is staying at Ronnie Donnie. Wanted to keep everyone posted on our excitement for the day! Here's hoping to no more exciting trach changes, only UNEVENTFUL ones. Tomorrow will be a better day, because I said so dammit, that's why!! Adios for now.
Saturday, June 2, 2012
I HATE SLOBS
I mean really! If you're using a public area (i.e. TCC parent kitchen area), wouldn't you have enough damn sense and common courtesy to clean up after yourself?! Obviously the answer if a big fat freakin' NO! But hey, that's alright. Nothing I'd like to do better than to clean up your sugar and cream packets after you made your coffee, you lazy slob stranger. Oh, and if was also you who then spilled the coffee in the microwave and didn't bother to wipe it up, hey no worries, I cleaned that up for you, too. Because I have nothing else to do besides clean up after your sorry, no-good ass. I mean, you know, I don't have a kid on this unit, too or anything.
Okay, I feel 10x better now. Just had to get a little venting in today. Honestly, that's the biggest of our worries right now. Pretty cool, huh? Colby has had a great couple of days. Yesterday he had two 30-minute windows off the vent. The 1st one went great up until the very end, then he had an oxygen dip. But never fear, Super Mama handled it. A little trach suctioning, popped that vent back on and ta-da, his oxygen was back in the 90's in no time. That's the first oxygen drop he's had since surgery. His 2nd window was "uneventful" and as you know, we love that. We sat him up in his wheelchair for an hour, and 30 minutes of that were a vent window. Colby is kickin' some trach ass, wouldn't you say?
Today we gave Colby a bath. De accessed his other port since he hasn't used it since being in the TCC. Hopefully around 2:30/3:00, after his 1:00 cough treatment and 2:00 feeding, we can get Colby up in his chair and get him OUTSIDE for a bit. The weather here is perfect for it. Those are our exciting plans for the day. I'm thinking maybe take a nap later. Go for a walk outside. Watch the Reds if they're on tonight. Oh yeah, big exciting agenda going on around here lol. Colby's dad is coming up tomorrow and we're going to cram all the trach education/training in we can during his visit. Don't want to be stuck up here waiting for him to get his trach stuff done.
Going to head back to the TCC now. I'm over at Ronnie Donnie just hanging out for a bit. Wanted to get out of that tiny room for a while. There's not enough room to cuss a cat in there! We keep Colby's power chair parked in the bathroom. There's room for only 1 person to sleep. Plus ALL of Colby's respiratory equipment. Good thing we all bathed today, huh? I'll let you know how it goes with making Colby portable on the vent. My guess is, Mama's got this!!
Okay, I feel 10x better now. Just had to get a little venting in today. Honestly, that's the biggest of our worries right now. Pretty cool, huh? Colby has had a great couple of days. Yesterday he had two 30-minute windows off the vent. The 1st one went great up until the very end, then he had an oxygen dip. But never fear, Super Mama handled it. A little trach suctioning, popped that vent back on and ta-da, his oxygen was back in the 90's in no time. That's the first oxygen drop he's had since surgery. His 2nd window was "uneventful" and as you know, we love that. We sat him up in his wheelchair for an hour, and 30 minutes of that were a vent window. Colby is kickin' some trach ass, wouldn't you say?
Today we gave Colby a bath. De accessed his other port since he hasn't used it since being in the TCC. Hopefully around 2:30/3:00, after his 1:00 cough treatment and 2:00 feeding, we can get Colby up in his chair and get him OUTSIDE for a bit. The weather here is perfect for it. Those are our exciting plans for the day. I'm thinking maybe take a nap later. Go for a walk outside. Watch the Reds if they're on tonight. Oh yeah, big exciting agenda going on around here lol. Colby's dad is coming up tomorrow and we're going to cram all the trach education/training in we can during his visit. Don't want to be stuck up here waiting for him to get his trach stuff done.
Going to head back to the TCC now. I'm over at Ronnie Donnie just hanging out for a bit. Wanted to get out of that tiny room for a while. There's not enough room to cuss a cat in there! We keep Colby's power chair parked in the bathroom. There's room for only 1 person to sleep. Plus ALL of Colby's respiratory equipment. Good thing we all bathed today, huh? I'll let you know how it goes with making Colby portable on the vent. My guess is, Mama's got this!!
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