It's 7:30 and I just wanna go to bed!! It's been a productive day (my fav) but now I have a headache, a sore throat and I'm sleepy. Guess that's because today is the first I haven't had my afternoon nap in the last 5 days. Not good. Good grief, I need to toughen up.
I've had lots of help with Colby since my slice-n-dice, just not from the extra hours I requested while recovering from surgery. FYI, sneezing while you have stitches in your throat is not a lovely experience. It think the extra nursing hours are just now getting approved, as they are sending out a new nurse tomorrow. Yesterday's "shifts" included the ex, our super fine shopaholic babysitter and 1 of Colby's nurses (don't forget the other nurse is MIA lately.) Had to use respite hours for the nurse last night, which is total bullshit. Today mama came over to help. We got brave and decided to get Colby outside so he could practice driving his power chair. Neither of us can pick Colby up, hence, the beginning of our problems. Oh sure, we'll just drag out the Hoyer lift that's been sitting in the corner collecting dust for months. All I can say is I'm thankful Colby is a sweet, patient boy and I'm really thankful no one was around with a video camera. We managed to unfold the lift, get the sling situated and get Colby up in his wheelchair. Only took 57 minutes or so! Seriously, it took about an hour. It was worth it to see Colby drive around the parking lot. He did great today. I would say it was 80/20, 80% of him really driving with purpose, stopping on purpose and even avoiding parked cars, the other 20% not really giving a crap if he ran into cars or off in the grass or not. That's real progress! Getting him out of the wheelchair with the lift was another story. Not sure what went awry, but it wasn't pretty. His butt started to slide out of the bottom of the sling. I was scared to death he was going to fall out out. I about crapped, but Colby seemed unfazed, and we finally got him on the couch. More practice tomorrow!
Made several phone calls today, imagine that. My main focus now is getting Colby another nurse to go to school with him. Also need a nurse to help me with Colby for the next few days. So in reality I guess I'm looking for 2 nurses, a short term one and a long term one. The nursing agency is sending out someone tomorrow. Great. It's been literally 2 years since I've had to meet and train a new nurse for Colby. My goal is to have him back in school next Wednesday. This is a big responsibility and I suppose until we find someone, maybe I'll be able to go to school with him. So if you know any dependable, non-crazy nurses licensed in Kentucky looking for Monday through Friday daytime work, send them my way.
I'd type more, but I really am tired. Going to take some ibuprofen, give Colby his evening cough treatment, and hit the sack early. I'll keep you posted on the new nurse. I don't have my hopes up, but maybe she'll surprise me and be a keeper. Bye y'all.
Monday, October 17, 2011
Saturday, October 15, 2011
HERE'S MY DEAL-E-O, PART 2
First of all, I don't have time for this crap. Not that you do. Like anybody sits around thinking, hey, I'll go to the doctor, maybe I'll get diagnosed with something. Like anybody wants to be sick in any way. But Colby needs me. He needs his mama and I can't take care of him right now. No lifting for 10 to 14 days, so I can't change him, put on his shaky vest or sit him up without help. Hate it, hate it, hate it. Makes me extremely sad and grumpy. Not to mention I'm 56 hours post right hemithyroidectomy and already bored out of my freaking mind. I'm watching a Big Bang Theory marathon and Colleen is in there getting Colby ready for bed. I have care covered for Colby tomorrow from 9 a.m. to 9 p.m. but after that, I'm going to start spacing out the help. I should be able to handle it for the most part. I feel pretty darn spry considering my throat was cut open 2 days ago. Much better with this surgery compared to the first. I have a sore throat and a little, tiny headache, but that's about it.
Second of all, I don't have adequate coverage for Colby anyways. The nursing agency I use, in all its glory and wonderfulness, still doesn't have the extra nursing hours I requested approved. This really should be a no brainer. Medicaid approved the hours the first time I asked for them, but then surgery had to be rescheduled. So what's the big freakin deal? All that changed is the surgery date. I'm asking for the same exact coverage. DUH. Every time I call to check on the hours, they say they need some extra documentation from me. Oh and not to mention I'm short a nurse right now also. Gonna be an interesting next couple of weeks, that's for sure.
I'm going to go cuddle up with my sweet boy now. At least I can still do that. This sucks. Really sucks. Don't want to deal with it. I'd rather be living back on Denial Street. Much easier to deal with all this when I was there. Hate this, hate this, hate this.
Second of all, I don't have adequate coverage for Colby anyways. The nursing agency I use, in all its glory and wonderfulness, still doesn't have the extra nursing hours I requested approved. This really should be a no brainer. Medicaid approved the hours the first time I asked for them, but then surgery had to be rescheduled. So what's the big freakin deal? All that changed is the surgery date. I'm asking for the same exact coverage. DUH. Every time I call to check on the hours, they say they need some extra documentation from me. Oh and not to mention I'm short a nurse right now also. Gonna be an interesting next couple of weeks, that's for sure.
I'm going to go cuddle up with my sweet boy now. At least I can still do that. This sucks. Really sucks. Don't want to deal with it. I'd rather be living back on Denial Street. Much easier to deal with all this when I was there. Hate this, hate this, hate this.
Wednesday, October 12, 2011
HERE'S MY DEAL-E-O, PART 1
I have thyroid cancer. There, I said it. Not my favorite topic of discussion, but ta-da, there you have it. Here's what happened:
Last week of April, went to my annual girlie parts exam. My OB/GYN felt a nodule on the left side of my throat and told me to go have an ultrasound. Oh glory. Went that day, ultrasound confirmed nodule on the left side of my thyroid. Perfect. My rock star nurse practitioner friend recommended going to an ENT and not a general surgeon. Went to ENT May 12. He did a scope to determine what type of biopsy I needed. He said an FNA (fine needle aspiration) biopsy would suffice. Went back 4 days later for an ultrasound and FNA in his office. Pathology came back undetermined. Well WTH does that mean exactly?! So I ask him, do I have thyroid cancer? He says, well you don't not have it. Obviously there are some cells acting up. Super duper. He recommends a hemithyroidectomy, removing only the left side of my thyroid. I said maybe we needed to be proactive and take out the whole thing. I mean come on, who wants to go through 2 surgeries, right? He says the hemithyroidectomy should take care of it. Cool. June 14 had outpatient surgery to remove left side of thyroid. Surgery was not that bad. I had the surgery on a Tuesday and was back to typing on Friday. What totally sucked is that I was on strict lifting restrictions. No lifting anything over 20 pounds for 10 to 14 days. Are you shitting me? You're shitting me, right? Colby weighs 65 pounds now. So I had to arrange for all this extra help with Colby and hated it. Grateful for the help, but let's face it, nobody can take care of him like his mama!
Oh, it gets better. Pathology from nodule came back positive for papillary carcinoma. Yep, thyroid cancer. Perfect, just perfect. ENT recommended taking out right side of thyroid. Mama was not happy at this news. A 2nd surgery, when I specifically asked him if we could just take the whole thyroid to begin with?! Still makes me angry when I think about it. Surgery was scheduled Aug 23. ENT called and needed to reschedule, which worked out well because that was the day Colby was admitted to the hospital. Surgery rescheduled twice in Sept but I had to cancel/reschedule because Colby was still in hospital. Once we get home I called to reschedule surgery. My ENT is doing mission work in Africa the whole month of October. I won't even repeat the stream of obscenities that burst out of my mouth upon hearing that news.
Long story longer, I'm having outpatient surgery tomorrow with another doc in the practice to remove rest of my thyroid. Am I nervous? Slightly. I've never even met this dude. All he's done is looked at my chart, records, pathology, etc. I'm totally pissed about not being able to take care of Colby. Trying to scramble around to get extra nursing hours approved, plus trying to find nurses to cover the hours. Thank God for our sweet, dependable, jabber jaws little babysitter. Without her, I'd be pretty screwed over the next few days. And of course thank God for my parents. They're probably going to have to help more, too. You know, we didn't see enough of each other in the 39 days and nights Colby was just in the hospital!!
So why am I telling you this long, boring story? To offer some advice. If I had to do over, I would INSIST the ENT take out all my thyroid to begin with. Actually there was an RT up at Cincy Children's who went through the same exact thing. She told doc to take it all out, he said no need, and she had 2 surgeries also. So if you or anyone you know is going through this, think about what I said. Chances are you'll have the whole thyroid removed sooner or later so what's the diff? No big deal being on thyroid medicine. It's cheap and millions of people are on it for hyper/hypothyroidism. Hindsight is 20/20, but I'm telling you if I could go back, this shit would have been over weeks, if not months ago. Just sayin'.
Well, gonna go pig out on some M&M's and make sure my duckies are in a row for tomorrow. No eating after midnight so I better get in my last supper. Girl gotta keep her strength up you know.
Last week of April, went to my annual girlie parts exam. My OB/GYN felt a nodule on the left side of my throat and told me to go have an ultrasound. Oh glory. Went that day, ultrasound confirmed nodule on the left side of my thyroid. Perfect. My rock star nurse practitioner friend recommended going to an ENT and not a general surgeon. Went to ENT May 12. He did a scope to determine what type of biopsy I needed. He said an FNA (fine needle aspiration) biopsy would suffice. Went back 4 days later for an ultrasound and FNA in his office. Pathology came back undetermined. Well WTH does that mean exactly?! So I ask him, do I have thyroid cancer? He says, well you don't not have it. Obviously there are some cells acting up. Super duper. He recommends a hemithyroidectomy, removing only the left side of my thyroid. I said maybe we needed to be proactive and take out the whole thing. I mean come on, who wants to go through 2 surgeries, right? He says the hemithyroidectomy should take care of it. Cool. June 14 had outpatient surgery to remove left side of thyroid. Surgery was not that bad. I had the surgery on a Tuesday and was back to typing on Friday. What totally sucked is that I was on strict lifting restrictions. No lifting anything over 20 pounds for 10 to 14 days. Are you shitting me? You're shitting me, right? Colby weighs 65 pounds now. So I had to arrange for all this extra help with Colby and hated it. Grateful for the help, but let's face it, nobody can take care of him like his mama!
Oh, it gets better. Pathology from nodule came back positive for papillary carcinoma. Yep, thyroid cancer. Perfect, just perfect. ENT recommended taking out right side of thyroid. Mama was not happy at this news. A 2nd surgery, when I specifically asked him if we could just take the whole thyroid to begin with?! Still makes me angry when I think about it. Surgery was scheduled Aug 23. ENT called and needed to reschedule, which worked out well because that was the day Colby was admitted to the hospital. Surgery rescheduled twice in Sept but I had to cancel/reschedule because Colby was still in hospital. Once we get home I called to reschedule surgery. My ENT is doing mission work in Africa the whole month of October. I won't even repeat the stream of obscenities that burst out of my mouth upon hearing that news.
Long story longer, I'm having outpatient surgery tomorrow with another doc in the practice to remove rest of my thyroid. Am I nervous? Slightly. I've never even met this dude. All he's done is looked at my chart, records, pathology, etc. I'm totally pissed about not being able to take care of Colby. Trying to scramble around to get extra nursing hours approved, plus trying to find nurses to cover the hours. Thank God for our sweet, dependable, jabber jaws little babysitter. Without her, I'd be pretty screwed over the next few days. And of course thank God for my parents. They're probably going to have to help more, too. You know, we didn't see enough of each other in the 39 days and nights Colby was just in the hospital!!
So why am I telling you this long, boring story? To offer some advice. If I had to do over, I would INSIST the ENT take out all my thyroid to begin with. Actually there was an RT up at Cincy Children's who went through the same exact thing. She told doc to take it all out, he said no need, and she had 2 surgeries also. So if you or anyone you know is going through this, think about what I said. Chances are you'll have the whole thyroid removed sooner or later so what's the diff? No big deal being on thyroid medicine. It's cheap and millions of people are on it for hyper/hypothyroidism. Hindsight is 20/20, but I'm telling you if I could go back, this shit would have been over weeks, if not months ago. Just sayin'.
Well, gonna go pig out on some M&M's and make sure my duckies are in a row for tomorrow. No eating after midnight so I better get in my last supper. Girl gotta keep her strength up you know.
Sunday, October 9, 2011
SOME GOOD, SOME BAD, GENERAL BLAH BLAH
Colby report: He's doing great. He's able to sit up longer and is not needing as many cough treatments and not as much bi-pap time. He's able to sit up in his power chair with his back brace on. Friday he sat up for an hour in the morning, then another hour later in the afternoon for home hospital schooling. Think I'll keep him on home hospital until the last week of October, then stick his butt back in school. His home hospital teacher brought his report card Friday for me to sign. Days attended, 2. Days absent, 25. That made me so sad. I hate that Colby has had to miss so much school, but what can you do? It is what it is I suppose. Tomorrow we're going to start working on his Halloween costume. I'm going to cut out pics of costumes and let him choose what he wants to be. His choices will be Frankenstein, a vampire, a crazy doctor or a cowboy. Can't wait to see which one he picks.
We'll be taking Colby up to Cincy for followup appts in November. On the 9th we go up for a couple of appointments, spend the night in the hospital and he'll have a sleep study, then have appts the next day on the 10th. This will knock out the pulmonary and cardiology followups. Then we'll go up the week after Thanksgiving for the neuro clinic. I'm trying to decide what to do about a dentist for Colby. He usually sees a pediatric dentist here in Louisville that specializes in special needs children. But after everything he went through with his recent hospital stay (mouth too small for intubations, etc.) I'm thinking maybe he needs more specialized dental care. Maybe he even needs to be sedated for his cleanings. The last few times I've taken him to the dentist it has been a nightmare so I guess it's something I need to look into. Sure, just add it to the "to do" list!
Amy report: I've been better. Even though we've been home for 8 days, I'm still not rested. Neither is my mom. I asked her yesterday how she felt, if she was rested up, and she said no not really. I said yeah, me neither. Guess it just takes a while. I keep thinking about Colby's hospital stay, and I don't really know why. It's over, it's in the past. He's going to be okay. It was a long stay, but certainly wasn't as life threatening as the one he had in 2009. Seems like it's been harder to get back in the groove this time. Must be the organizing, purging, etc I've decided to do. I really didn't have a choice. Hard to unpack 3 big bags of hospital supplies when all of Colby's drawers and closet shelves were full of crap already.
Yesterday we went to a memorial service for a family member (Colby stayed home with sitters.) During the service I kept thinking about the saying, "Don't judge a book by its cover." Before his cancer battle, he was what you would call a "big burly dude." He was over 6 feet tall, stocky, broad shoulder, and had this long, wild, wavy hair. At first glance he looked like he could chew you up and spit you out. But his personality did not reflect that rough exterior. His brother, at the memorial, said he lived life "at full tilt." I admire people who do that. Someone else spoke of his honesty. Another told of his "love thy neighbor" attitude. Under all that roughness was a friendly, giving, trustworthy, hardworking man who did right by those he loved. Like they said, even in death he helped others, as he decided to donate his body to cancer research, which I think is a most noble thing to do. He was a wonderful addition to our family and he'll be missed greatly.
I don't know what the crap is going on around here. We came home last weekend to a non-working TV in the living room. You know, the nice flat screen that "Santa" typed extra lines to get. "Santa" totally splurged that Christmas so Colby could have a nice TV, since that's something he enjoys so much. "Santa" is totally freakin' pissed that after not even 3 years (will be 3 in December) the TV is shot. Dad took it to HH Gregg for me, but they said there was nothing they could do. WTH? So now I have a little TV setting on top of boxes in the living room (very classy) and it's not working either. Sonofabitch. Called Insight. After being put on hold tonight from 11:49 to 12:04, the tech informs me I need a mini box. Whatever. So Insight is sending out a mini box in the morning. Then we noticed my dryer isn't drying. Seriously? So Dad, bless his heart, packed it up tonight and is going to take that somewhere to get it fixed. And oh yeah, my cordless house phone doesn't hold a charge for more than 2 minutes. That's probably an easy fix, hopefully just the battery is low. Let's take bets on what breaks next, the microwave, hot water heater or the kitchen sink will leak again. What's your bet?
Well I guess I've babbled on long enough. Better get some sleep so tomorrow I can tackle ordering supplies for Colby, a dr appt for me and hopefully cleaning out Colby's other dresser. Need the drawer space! Nite all, time for me to try and put my brain in pause mode for a bit and get some sleep. Have a good week.
We'll be taking Colby up to Cincy for followup appts in November. On the 9th we go up for a couple of appointments, spend the night in the hospital and he'll have a sleep study, then have appts the next day on the 10th. This will knock out the pulmonary and cardiology followups. Then we'll go up the week after Thanksgiving for the neuro clinic. I'm trying to decide what to do about a dentist for Colby. He usually sees a pediatric dentist here in Louisville that specializes in special needs children. But after everything he went through with his recent hospital stay (mouth too small for intubations, etc.) I'm thinking maybe he needs more specialized dental care. Maybe he even needs to be sedated for his cleanings. The last few times I've taken him to the dentist it has been a nightmare so I guess it's something I need to look into. Sure, just add it to the "to do" list!
Amy report: I've been better. Even though we've been home for 8 days, I'm still not rested. Neither is my mom. I asked her yesterday how she felt, if she was rested up, and she said no not really. I said yeah, me neither. Guess it just takes a while. I keep thinking about Colby's hospital stay, and I don't really know why. It's over, it's in the past. He's going to be okay. It was a long stay, but certainly wasn't as life threatening as the one he had in 2009. Seems like it's been harder to get back in the groove this time. Must be the organizing, purging, etc I've decided to do. I really didn't have a choice. Hard to unpack 3 big bags of hospital supplies when all of Colby's drawers and closet shelves were full of crap already.
Yesterday we went to a memorial service for a family member (Colby stayed home with sitters.) During the service I kept thinking about the saying, "Don't judge a book by its cover." Before his cancer battle, he was what you would call a "big burly dude." He was over 6 feet tall, stocky, broad shoulder, and had this long, wild, wavy hair. At first glance he looked like he could chew you up and spit you out. But his personality did not reflect that rough exterior. His brother, at the memorial, said he lived life "at full tilt." I admire people who do that. Someone else spoke of his honesty. Another told of his "love thy neighbor" attitude. Under all that roughness was a friendly, giving, trustworthy, hardworking man who did right by those he loved. Like they said, even in death he helped others, as he decided to donate his body to cancer research, which I think is a most noble thing to do. He was a wonderful addition to our family and he'll be missed greatly.
I don't know what the crap is going on around here. We came home last weekend to a non-working TV in the living room. You know, the nice flat screen that "Santa" typed extra lines to get. "Santa" totally splurged that Christmas so Colby could have a nice TV, since that's something he enjoys so much. "Santa" is totally freakin' pissed that after not even 3 years (will be 3 in December) the TV is shot. Dad took it to HH Gregg for me, but they said there was nothing they could do. WTH? So now I have a little TV setting on top of boxes in the living room (very classy) and it's not working either. Sonofabitch. Called Insight. After being put on hold tonight from 11:49 to 12:04, the tech informs me I need a mini box. Whatever. So Insight is sending out a mini box in the morning. Then we noticed my dryer isn't drying. Seriously? So Dad, bless his heart, packed it up tonight and is going to take that somewhere to get it fixed. And oh yeah, my cordless house phone doesn't hold a charge for more than 2 minutes. That's probably an easy fix, hopefully just the battery is low. Let's take bets on what breaks next, the microwave, hot water heater or the kitchen sink will leak again. What's your bet?
Well I guess I've babbled on long enough. Better get some sleep so tomorrow I can tackle ordering supplies for Colby, a dr appt for me and hopefully cleaning out Colby's other dresser. Need the drawer space! Nite all, time for me to try and put my brain in pause mode for a bit and get some sleep. Have a good week.
Thursday, October 6, 2011
TOOTH SHMOOTH
Let me tell you just how cool my kid is. Yesterday I brought out a mirror and showed Colby where his front tooth is now missing (hey thanks "local hospital"). I asked, "So Colby, does it bother you that your tooth is missing, yes or no?" His eyes darted to the NO answer! Love it! He was like, gee Mom, who gives 2 craps if I have both my front teeth or not? Yep, that's my boy. He also sat up in his Tumbleform chair today, the 1st time sitting up since August. He sat up for a half hour, no problems. Probably could have gone longer, but I didn't want to push him.
Colby has also started home hospital schooling. Not sure how long he'll be doing that, however long it takes to build up his strength/endurance. Don't want to send him to school and have him struggle. He'll have it 2 days a week, 1 hour each session. The teacher doing HH is Ms. Mackenzie. She teaches at Churchill Park but she's not Colby's regular teacher. Yesterday they worked on getting to know each other and worked on his "All About Me" book. He was using a switch to operate scissors and helping her cut out the pictures. Then they worked on eye gaze, making choices. Ms. Mackenzie (am I spelling that right?) said she was very impressed with Colby's eye communication. Well yeah, the kid's a freakin' genius I tell ya. Wouldn't expect any less. Wait til she sees him use his communication device with eye gaze. All I can say is I hope she likes knock-knock jokes.
I've been making a gianormous "to do" list, trying to figure out what has to be done before next Thursday (my surgery) and what can wait til after. Trying to figure out if there's anything I can pawn off on anybody else haha. Even though I've felt a bit overwhelmed at times, okay, practically every minute we've been home, I've loved hanging out and taking care of Colby, working around the apartment. I still plan to buy a house. It's always in the back of my mind and my realtor still sends me listings. Just don't know if it would be the best idea at this moment considering everything else that has been/will be going on. So with that said, I've decided to make the best of living in this apartment. This means room-by-room cleaning, organizing and purging and I'm totally geeked to work on it right now! I'm throwing out crap right and left. I intend to keep doing it until the clutter is gone, Colby's room is arranged in the most efficient way possible for all his equipment and supplies, and I'm proud and happy to call this dump my home again. It'll happen, but just like anything else around here, will take more time than it would for someone else. And what the heck, I'll go ahead and take the Spongebob border off the walls in MY bedroom now since Colby and I switched rooms last December. And I wonder why I'm single?!
Shhhhh, listen. Hear it? It's that Reese's cup over in the candy dish calling my name. Better go see what it wants. Nite all. Keep it classy.
Colby has also started home hospital schooling. Not sure how long he'll be doing that, however long it takes to build up his strength/endurance. Don't want to send him to school and have him struggle. He'll have it 2 days a week, 1 hour each session. The teacher doing HH is Ms. Mackenzie. She teaches at Churchill Park but she's not Colby's regular teacher. Yesterday they worked on getting to know each other and worked on his "All About Me" book. He was using a switch to operate scissors and helping her cut out the pictures. Then they worked on eye gaze, making choices. Ms. Mackenzie (am I spelling that right?) said she was very impressed with Colby's eye communication. Well yeah, the kid's a freakin' genius I tell ya. Wouldn't expect any less. Wait til she sees him use his communication device with eye gaze. All I can say is I hope she likes knock-knock jokes.
I've been making a gianormous "to do" list, trying to figure out what has to be done before next Thursday (my surgery) and what can wait til after. Trying to figure out if there's anything I can pawn off on anybody else haha. Even though I've felt a bit overwhelmed at times, okay, practically every minute we've been home, I've loved hanging out and taking care of Colby, working around the apartment. I still plan to buy a house. It's always in the back of my mind and my realtor still sends me listings. Just don't know if it would be the best idea at this moment considering everything else that has been/will be going on. So with that said, I've decided to make the best of living in this apartment. This means room-by-room cleaning, organizing and purging and I'm totally geeked to work on it right now! I'm throwing out crap right and left. I intend to keep doing it until the clutter is gone, Colby's room is arranged in the most efficient way possible for all his equipment and supplies, and I'm proud and happy to call this dump my home again. It'll happen, but just like anything else around here, will take more time than it would for someone else. And what the heck, I'll go ahead and take the Spongebob border off the walls in MY bedroom now since Colby and I switched rooms last December. And I wonder why I'm single?!
Shhhhh, listen. Hear it? It's that Reese's cup over in the candy dish calling my name. Better go see what it wants. Nite all. Keep it classy.
Tuesday, October 4, 2011
I'M WORKING ON IT, OKAY?!
Working on getting back to a "normal" schedule around here. Last night I gave Colby a cough treatment at 11:00, then didn't give him another one until 6:30 this morning. He has done just fine today so I think we can lay off the overnight cough treatments soon. Think tonight will be the last time. Good! We still need to get caught up on our sleep. Colby has had a most excellent day today. He was off his bi-pap for 1.5 hours early this morning. His bath aide came over and we cut his hair and gave him a bath (pics to follow). He was off his bi-pap most of that time, too. So tomorrow we're going to try to sit Colby up for a while. Even if he has to stay on his bi-pap, I think it's time. He'll start home hospital tomorrow. The teacher will come here 1 hour 2 times a week until he's ready to go back to school.
Working on getting the apartment back in order. Our super-fine, hard-working babysitter came over today and helped me for 3 hours solid. We unpacked Colby's extra supplies from the hospital, put up clean laundry, did dishes, etc. Oh crap, that reminds me I have a load of laundry in the washer that needs to be dried. Note to self, put clothes in dryer. The living room looks much better than it did, although it's not back to being presentable just yet. Should be able to get it mostly straightened up tomorrow morning. The mountain of paperwork/mail remains. Hope to tackle that this weekend.
Working on schedules. Talked to Cincy Children's 3 times yesterday ironing out Colby's followup appointments for November. Called my ENT office today to re-re-reschedule my surgery, which will now be next week. Now I have to figure out when I can get back to typing. Hmmm, I'm thinking October isn't looking too promising!
Working on eating better, taking better care of myself. Gotta get geared up for the next slice-n-dice. Honestly, I was tired of eating crap hospital food. Went Krogering last night and got some healthier stuff, actual fruits and veggies. Doesn't help, though, that there are still 2 huge bags of leftover hospital snacks around here. Good stuff, too. Reese's cups, Airheads, Starbursts, Sunchips, Ritz crackers of course. My new fascination: Nutter Butter bites. Oh my they're addicting. I need to lock those things out in the van, they're nothing but trouble.
Working on not being too hard on myself. I knew things would be difficult around here for a while once we got home. I need to be patient with myself. Some things are just going to take longer than others. Who is the person who is hardest on me? It's me, and I really need to stop that. I AM working to get better organized, not so discombobulated (love that word.) I'll be honest, it's been hard. I haven't had my "let down meltdown" yet, but I know it's coming. That's the way I've always been. I'm great during the stress episode itself. Then once things return somewhat to normalcy, I reflect back on what happened, the seriousness of it all. I'll need some time to digest what has happened over the last few weeks and then have a good old fashioned cry-myself-to-sleep night. And I'm going to allow myself to do it. I deserve it.
That's it for now I suppose. Nitey-nite blogland.
Working on getting the apartment back in order. Our super-fine, hard-working babysitter came over today and helped me for 3 hours solid. We unpacked Colby's extra supplies from the hospital, put up clean laundry, did dishes, etc. Oh crap, that reminds me I have a load of laundry in the washer that needs to be dried. Note to self, put clothes in dryer. The living room looks much better than it did, although it's not back to being presentable just yet. Should be able to get it mostly straightened up tomorrow morning. The mountain of paperwork/mail remains. Hope to tackle that this weekend.
Working on schedules. Talked to Cincy Children's 3 times yesterday ironing out Colby's followup appointments for November. Called my ENT office today to re-re-reschedule my surgery, which will now be next week. Now I have to figure out when I can get back to typing. Hmmm, I'm thinking October isn't looking too promising!
Working on eating better, taking better care of myself. Gotta get geared up for the next slice-n-dice. Honestly, I was tired of eating crap hospital food. Went Krogering last night and got some healthier stuff, actual fruits and veggies. Doesn't help, though, that there are still 2 huge bags of leftover hospital snacks around here. Good stuff, too. Reese's cups, Airheads, Starbursts, Sunchips, Ritz crackers of course. My new fascination: Nutter Butter bites. Oh my they're addicting. I need to lock those things out in the van, they're nothing but trouble.
Working on not being too hard on myself. I knew things would be difficult around here for a while once we got home. I need to be patient with myself. Some things are just going to take longer than others. Who is the person who is hardest on me? It's me, and I really need to stop that. I AM working to get better organized, not so discombobulated (love that word.) I'll be honest, it's been hard. I haven't had my "let down meltdown" yet, but I know it's coming. That's the way I've always been. I'm great during the stress episode itself. Then once things return somewhat to normalcy, I reflect back on what happened, the seriousness of it all. I'll need some time to digest what has happened over the last few weeks and then have a good old fashioned cry-myself-to-sleep night. And I'm going to allow myself to do it. I deserve it.
That's it for now I suppose. Nitey-nite blogland.
Sunday, October 2, 2011
THE LASTS & THE FIRSTS
When you're looking forward to a change, do you count down? For example, Friday night I was thinking, this is the last time I'll sleep on this piece-of-shit excuse of a bed. Saturday morning I thought, this is the last time I'll drink coffee from this cafeteria. Tomorrow I'll be brewing my own. I found myself looking ahead to the last of the hospital food, morning and afternoon rounds, PICC line antibiotics and riding the elevators with strangers and their ugly feet. The last of having absolutely no privacy or peace and quiet. And I hope it's the last of all that stuff for a very, very, very long time. Yep, there's no place like home for sure.
Colby's discharge from Cincy Children's couldn't have gone any smoother than it did. His discharge nurse did an excellent job getting everything coordinated. I had asked her to schedule the ambulance to pick us up at 3:00 Saturday. Colby got his last antibiotic at 1:30, which took half an hour to run through, then Colby's nurse removed his PICC line. He got a cough treatment at 2:00. We had all our personal stuff already packed in Mom's car. I reviewed and signed off on Colby's discharge instructions/papers. The ambulance arrived at exactly 3:00 (good thing for them, huh?) and away we went. Mom got in her car and drove home, Colby and I got in the ambulance. I was worried about traffic since there was a race at Sparta, but there were no issues. So here we are finally at home in sweet old Louisville.
Okay, there was 1 little snafoo, and when my parents read this they will crap. We had no pulse/ox for Colby on the way home. Whoopsie, that's 1 item that is with Colby 24/7. I just assumed there was a monitor in the ambulance. Wrong! I quickly learned there are 2 types of ambulances and we were NOT in the type that carried monitors/pulse ox machines. Our options were, the ambulance drivers go and get a pulse/ox for the trip, or just go for it. I chose the latter. Colby was using his new Trilogy, plus I had all his equipment for the ride home (except pulse/ox), even had the backup battery "just in case." I sat and watched Colby the whole time. No problems, no worries, he did fine.
Now we're on our firsts. The first we've slept in our own beds in 40 days. The first Colby and I have been alone with each other in over 5 weeks. The first for me taking care of Colby completely in days. I made and drank my coffee this morning with no worry of missing rounds or needing to get back to Colby. Rosa came over and watched Colby so I could go to Mass. I was away from Colby for 2 hours, the 1st time that has happened since August. Looking forward to many other firsts as the week goes on.
Colby and I both seem misconbobulated. He has had a high heart rate on and off throughout the day. I had them give him his flu shot right before discharge, so I'm assuming the high HR is from that. Goes down when I give him Motrin. This apartment is a complete wreck. I don't mean it's a little messy, I mean everywhere you look there is work to do. Clean clothes to put away, dirty clothes to sash, boxes of snacks to organize lol, bags of supplies to go through and unpack/organize, a new piece of equipment to learn to use, etc. There were 27 messages on my home phone, 9 of which need to be returned as soon as possible. So you know what I'll be doing in the morning. I tried to keep up with my mail some while away, but still loads of it to go through. The fridge is empty except for condiments and booze. I have a lot of scheduling juggling to do, get Colby's home hospital schooling started, reschedule my surgery, get back to work. But none of that matters at this exact moment. Nothing else matters except WE'RE HOME, we're together and Colby is getting better. All the rest of this crap will fall into place as the weeks progress. Okay, gotta get that sweet boy in bed. G'nite all.
Colby's discharge from Cincy Children's couldn't have gone any smoother than it did. His discharge nurse did an excellent job getting everything coordinated. I had asked her to schedule the ambulance to pick us up at 3:00 Saturday. Colby got his last antibiotic at 1:30, which took half an hour to run through, then Colby's nurse removed his PICC line. He got a cough treatment at 2:00. We had all our personal stuff already packed in Mom's car. I reviewed and signed off on Colby's discharge instructions/papers. The ambulance arrived at exactly 3:00 (good thing for them, huh?) and away we went. Mom got in her car and drove home, Colby and I got in the ambulance. I was worried about traffic since there was a race at Sparta, but there were no issues. So here we are finally at home in sweet old Louisville.
Okay, there was 1 little snafoo, and when my parents read this they will crap. We had no pulse/ox for Colby on the way home. Whoopsie, that's 1 item that is with Colby 24/7. I just assumed there was a monitor in the ambulance. Wrong! I quickly learned there are 2 types of ambulances and we were NOT in the type that carried monitors/pulse ox machines. Our options were, the ambulance drivers go and get a pulse/ox for the trip, or just go for it. I chose the latter. Colby was using his new Trilogy, plus I had all his equipment for the ride home (except pulse/ox), even had the backup battery "just in case." I sat and watched Colby the whole time. No problems, no worries, he did fine.
Now we're on our firsts. The first we've slept in our own beds in 40 days. The first Colby and I have been alone with each other in over 5 weeks. The first for me taking care of Colby completely in days. I made and drank my coffee this morning with no worry of missing rounds or needing to get back to Colby. Rosa came over and watched Colby so I could go to Mass. I was away from Colby for 2 hours, the 1st time that has happened since August. Looking forward to many other firsts as the week goes on.
Colby and I both seem misconbobulated. He has had a high heart rate on and off throughout the day. I had them give him his flu shot right before discharge, so I'm assuming the high HR is from that. Goes down when I give him Motrin. This apartment is a complete wreck. I don't mean it's a little messy, I mean everywhere you look there is work to do. Clean clothes to put away, dirty clothes to sash, boxes of snacks to organize lol, bags of supplies to go through and unpack/organize, a new piece of equipment to learn to use, etc. There were 27 messages on my home phone, 9 of which need to be returned as soon as possible. So you know what I'll be doing in the morning. I tried to keep up with my mail some while away, but still loads of it to go through. The fridge is empty except for condiments and booze. I have a lot of scheduling juggling to do, get Colby's home hospital schooling started, reschedule my surgery, get back to work. But none of that matters at this exact moment. Nothing else matters except WE'RE HOME, we're together and Colby is getting better. All the rest of this crap will fall into place as the weeks progress. Okay, gotta get that sweet boy in bed. G'nite all.
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