Been a busy but good week. For starters, we got Colby back in school. Took him 2.5 hours on both Tues and today. It was so great getting back to more of our normal routine around here. Of course everyone at school oooo'ed and aaaah'ed over him. Colby's school is special in so many ways, most of all by the staff that work there. They "get it" - the overall big picture of having, helping, teaching a special needs child. They "get it" that sometimes our only goal is to get our children to school. Just get them up and through the school doors with no major health crises. That was certainly my only goal this week for Colby. Love that school. Love that Colby is slowly getting back. Today was a very difficult day, though, because a student at the school passed away this morning. Making matters worse, the student's dad is a staff member there. Devastating when we as a small school community lose one of the students, but this is a double whammy.
Next week we're going to try for Mon, Wed, Fri for Colby going to school. And by "we" I mean a nurse, Colby and myself. That's right, a real live nurse to help out. And it gets better. She's thinking of being the nurse that goes to school with Colby. We used this week as a pilot I guess, to see if she would be interested. I don't think she wants to be it full time, but right now I'll take what I can get. Yeah baby, love it when a plan starts to come together.
Been talking a lot with the nursing agency this week. Good communication, what a concept! Wanted to make sure everyone was on the same page. I guess all the confusion recently isn't totally their fault, although I'm sure none of it could be my fault haha. I tried to explain to the nurse scheduler that a lot of my anger, 90% probably, is misdirected. I'm pissed off at the nurse that up and left Colby and me high and dry 2 days before my surgery, having to worry about getting another nurse. Yes, I know the kind, Christian thing to do would be to forgive this person. Let it go, have faith that in the end it will work out for the best. Blah, blah, blaaaaaaah, sorry, just not there yet. Couldn't have been crappier timing on her part. I do like the nurse they sent to work with Colby. Very good nursing skills, very professional, easy to talk to, get along with. I'm thrilled that she wants to work with us and that we now have hours to let her use. Only thing is she wants to only work through the week, not on weekends. Guess I'll have to tone down my rockin' social life. Oh my, that's a knee slapper, isn't it?!
But speaking of socializing, I get to do a little this weekend. That's awesomely awesome. Wine Night is tomorrow night here at the apartment. Haven't seen these gals since August. Miss them. Lots of people think that at Wine Night we get together, learn about, taste and critique wines. Uh, no. We just get together to eat, drink and blow off some steam. Nothing fancy-schmancy at all. Saturday Colby and I are going to a fall festival/trick-or-treating thing here in Louisville, along with friends of ours. Then as of right now, Colby's dad is coming over Sat night and I have plans to get out with Joni and her sis for some Halloween fun. Very excited!
That's the scoop here. Need to get in bed. Some major house cleaning and some minor snack making need to take place around here before 6:30 p.m. when the wine shall floweth and we shall talketh like the silly gals we are. Nite peeps.
Thursday, October 27, 2011
Monday, October 24, 2011
ZIP-A-DEE-DOO-DAH
Since I "talked" your ears off last night, I'll make this entry short and sweet.
Been a good day. Really good. Nurse showed up on time. She's kinda quiet, which if you know any of my friends, I'm not used to that, wink-wink. She did a great job working with Colby. I think she may be a little overwhelmed with learning his routine, but that's totally understandable. It's a lot to learn - new machines, Colby's little ways, me watching over her shoulder (just until she gets the hang of it.) Overall I was impressed with her. She was professional and asked appropriate questions. I even let her practice driving Colby's power chair, just out in the big, open parking lot for now. She's coming back tomorrow. Hope all goes as well then as it did today.
Colby's costume is now 95% complete. Having trouble with the last piece and honestly don't know where to find what we're looking for. Even if we don't get it all together the way I would like, you know he'll still be adorable in his ______ costume =-)
My mom will be thrilled to hear we found Colby's glasses! Colby has 2 pairs of glasses, one of which are the transitional lens for when he goes outside. Of course those were the ones that were misplaced (not lost I kept telling her.) They've been "misplaced" for about 10 days now. Every time Mom comes over here she has torn this place up looking for those things. I went to look for something I had dropped under Colby's bed, and ta-da, there they were. Mystery solved.
That's all I got. Geez, when nothing explodes and/or implodes, the day is just downright boring around here. Just kidding. I'd take this kind of day over and over again x 100. No drama, no major problems, Colby doing well. You know, the way it SHOULD be and the way I hope becomes our norm very soon. Adios for now.
Been a good day. Really good. Nurse showed up on time. She's kinda quiet, which if you know any of my friends, I'm not used to that, wink-wink. She did a great job working with Colby. I think she may be a little overwhelmed with learning his routine, but that's totally understandable. It's a lot to learn - new machines, Colby's little ways, me watching over her shoulder (just until she gets the hang of it.) Overall I was impressed with her. She was professional and asked appropriate questions. I even let her practice driving Colby's power chair, just out in the big, open parking lot for now. She's coming back tomorrow. Hope all goes as well then as it did today.
Colby's costume is now 95% complete. Having trouble with the last piece and honestly don't know where to find what we're looking for. Even if we don't get it all together the way I would like, you know he'll still be adorable in his ______ costume =-)
My mom will be thrilled to hear we found Colby's glasses! Colby has 2 pairs of glasses, one of which are the transitional lens for when he goes outside. Of course those were the ones that were misplaced (not lost I kept telling her.) They've been "misplaced" for about 10 days now. Every time Mom comes over here she has torn this place up looking for those things. I went to look for something I had dropped under Colby's bed, and ta-da, there they were. Mystery solved.
That's all I got. Geez, when nothing explodes and/or implodes, the day is just downright boring around here. Just kidding. I'd take this kind of day over and over again x 100. No drama, no major problems, Colby doing well. You know, the way it SHOULD be and the way I hope becomes our norm very soon. Adios for now.
Sunday, October 23, 2011
IT'S GETTING WEIRD AROUND HERE (Weirder)
I'm in the mood to "talk" so pull up a chair. Here it goes.
First, my favorite subject ever, Colby Michael. He's doing quite well. I was concerned over the weekend because he's had some episodes of high heart rate. It was pretty bad Friday. No fever, no drop in oxygen, but his heart rate was way too high and his face was beet red/flushed. It was weird. I thought oh great, we'll be in Cincy before the weekend is over. He did the same thing on Saturday but not as bad. Today was better also. I don't know what the heck is going on, but I'm keeping a very close eye on him. No more trips to you-know-where for a long, long time, please and thank you.
We've got Colby's Halloween costume 90% ready at this point. Still trying to pull the last bit of it together. Some of you know what it is, but for the most part I've kept it a secret so if you know, don't tell! Hope the weather is decent for this weekend and trick-or-treat. We've got some big plans and don't need them ruined by yucky weather.
Some time this week Colby will be going back to school. Haven't decided what days and for how long each day, but he will grace the doors of Churchill Park at some point. Since we don't have a nurse, I'm the one who will be taking him and staying with him during the school day. So we don't need to make arrangements with the bus driver, schedule a nurse, etc. Guess we'll wing it based on how Colby is feeling. We absolutely are going on Thursday for trick-or-treating at school. I mean you know, why else do you take your kid to school if not for trick-or-treat day? Can't think of a better reason to take him to school if you ask me.
Now let's recap this past week's nursing fiasco. First of all, we had the same 2 nurses for the last couple of years or so. One of them went MIA a couple weeks ago and the other can't work right now due to personal family reasons. Okay, let's get some new nurses in here to help, sounds easy enough. WRONG!! Nurse #1, we like her, she's great. Would love for her to work with Colby. She was unable to work over the weekend (both Sat and Sun) due to not having her paperwork turned into the nursing agency. She's supposed to be here Monday night, hope she gets the paperwork turned in. Nurse #2, we like her too. She trained for 3 hours last Wed. Was supposed to come back on Thurs. Called and asked if she could reschedule. I wasn't happy about it but whatever. She's supposed to be here tomorrow morning. So help me, for her own good, she better not be late. Tired of all the lame ass excuses. Nurse #3, this nurse contacted me, interested in going to school with Colby. Great, fantastic, love it. She was supposed to be here Sat at 11:00. Called to say she needed to attend a funeral and could she come later in the day. Sure, why not? She was a complete no-show. She never showed up and she never called, so that bitch is fired before she's even hired. Don't want to hear back from her. Let's see what the week brings as far as nursing goes. Should be interesting I'm sure.
Our rock star babysitter was here last night helping me with Colby. While she got him ready for bed, I went to Wal-Mart to check on Halloween costumes. I was in the store thinking if I don't find some stress relief, I'm going to stroke out around here. Puzzles! I always loved working puzzles so I bought a 550 piece. Just something to do to take my mind off the BS that arises on occasion around here. Being the dork I am, I stayed up until 2:00 a.m. finishing the puzzle in 1 night. But it really did help. I enjoyed doing it and had the best attitude when I went to bed. I was thinking, I need to focus on the good in my life. Decided the next time I blog I was going to focus totally on the positive aspects of our lives. Turn all these worries over to God, he'll guide me to the answers when it's time, all that feel good kind of stuff. Went to bed with a light heart and smile on my face. Then WHAM! CRACK, BOOM, BAM! The top shelf of my entertainment center exploded, literally, at 6:30 this morning. It was horrible. This big crash, glass breaking. I thought someone had broken into the apartment. For a few seconds, I really thought our lives were in danger. It was terrifying. Once I realized no one was here, I just couldn't believe what I saw. I was like, WTH just happened here? You can call it what you want, manufacturer defect, heat from electrical equipment, blah, blah. I think I've got some bad spirits, karma, SOMETHING like that following me around right now. Think about it. I've never been sick a day in my life, never had a stitch, a broken bone. Never been to the hospital except to have Colby, then I get thyroid cancer. Colby had been out of the hospital for almost a year, then ends up in the hospital for 39 days. We get home from the hospital and my TV, dryer, cordless phone and now entertainment center are all broke and/or not working. Oh yeah, and the screwed up nursing situation. It's like a cloud of uncertainty and anxiousness is with me right now. I think these strange, for lack of a better word, "evil" vibes were pissed that my attitude was changing for the better. So they wanted to get my attention, hence breaking the entertainment center. Does that sound crazy? Of course it does, it came from my brain. But I've got news for whatever is causing the jacked up, weird, eerie force that is hanging around here. YOU WON'T WIN. Colby and I will. So you might as well pack your bags, get the hell out of here and bother somebody else.
Well now that I've convinced you I'm a total cuckoo head, there are good things going on around here, too. My sweet stepbrother and sister-in-law offered to put my stuff in storage up at their place. This will save me significant $$ getting my stuff out of my storage unit. Even better, my stepdad and sis-in-law came over, drove to my unit and packed up everything. I didn't have to do anything! Can't beat that with a stick. Plus my sis-in-law brought me pumpkin bread. I mean really, that kinda rocked. I appreciate them doing that for me. Let's face it, I'm not rolling around in extra cash around here.
Another wonderful thing in our lives, my friends are working on a benefit for Colby and me. There's a committee of 5 or 6 of my girlie friends pulling this together. They're putting together a whole day of events. Plans are still being made, but here's what I know for sure: Saturday, November 19th at the Sellersburg Moose Lodge (of course, where else would it be?!) Early in the day there will be vendors having a Christmas bazaar. Later on that evening there will be a silent auction and 2 or 3 bands playing. They just up and started planning it. Means a lot to me. I've been blessed with the bestest buddies on the planet.
Told you I was chatty tonight. Guess I've just got some nervous energy. Heck, I'm half afraid to go to sleep. What will break or explode next around here? Not much left, haha. I'll keep you posted. This crappiness has to turn around at some point. We're ready! Bring on the happy, happy sunshiny, no worry days, and hurry the heck up, lol. Nitey nite.
First, my favorite subject ever, Colby Michael. He's doing quite well. I was concerned over the weekend because he's had some episodes of high heart rate. It was pretty bad Friday. No fever, no drop in oxygen, but his heart rate was way too high and his face was beet red/flushed. It was weird. I thought oh great, we'll be in Cincy before the weekend is over. He did the same thing on Saturday but not as bad. Today was better also. I don't know what the heck is going on, but I'm keeping a very close eye on him. No more trips to you-know-where for a long, long time, please and thank you.
We've got Colby's Halloween costume 90% ready at this point. Still trying to pull the last bit of it together. Some of you know what it is, but for the most part I've kept it a secret so if you know, don't tell! Hope the weather is decent for this weekend and trick-or-treat. We've got some big plans and don't need them ruined by yucky weather.
Some time this week Colby will be going back to school. Haven't decided what days and for how long each day, but he will grace the doors of Churchill Park at some point. Since we don't have a nurse, I'm the one who will be taking him and staying with him during the school day. So we don't need to make arrangements with the bus driver, schedule a nurse, etc. Guess we'll wing it based on how Colby is feeling. We absolutely are going on Thursday for trick-or-treating at school. I mean you know, why else do you take your kid to school if not for trick-or-treat day? Can't think of a better reason to take him to school if you ask me.
Now let's recap this past week's nursing fiasco. First of all, we had the same 2 nurses for the last couple of years or so. One of them went MIA a couple weeks ago and the other can't work right now due to personal family reasons. Okay, let's get some new nurses in here to help, sounds easy enough. WRONG!! Nurse #1, we like her, she's great. Would love for her to work with Colby. She was unable to work over the weekend (both Sat and Sun) due to not having her paperwork turned into the nursing agency. She's supposed to be here Monday night, hope she gets the paperwork turned in. Nurse #2, we like her too. She trained for 3 hours last Wed. Was supposed to come back on Thurs. Called and asked if she could reschedule. I wasn't happy about it but whatever. She's supposed to be here tomorrow morning. So help me, for her own good, she better not be late. Tired of all the lame ass excuses. Nurse #3, this nurse contacted me, interested in going to school with Colby. Great, fantastic, love it. She was supposed to be here Sat at 11:00. Called to say she needed to attend a funeral and could she come later in the day. Sure, why not? She was a complete no-show. She never showed up and she never called, so that bitch is fired before she's even hired. Don't want to hear back from her. Let's see what the week brings as far as nursing goes. Should be interesting I'm sure.
Our rock star babysitter was here last night helping me with Colby. While she got him ready for bed, I went to Wal-Mart to check on Halloween costumes. I was in the store thinking if I don't find some stress relief, I'm going to stroke out around here. Puzzles! I always loved working puzzles so I bought a 550 piece. Just something to do to take my mind off the BS that arises on occasion around here. Being the dork I am, I stayed up until 2:00 a.m. finishing the puzzle in 1 night. But it really did help. I enjoyed doing it and had the best attitude when I went to bed. I was thinking, I need to focus on the good in my life. Decided the next time I blog I was going to focus totally on the positive aspects of our lives. Turn all these worries over to God, he'll guide me to the answers when it's time, all that feel good kind of stuff. Went to bed with a light heart and smile on my face. Then WHAM! CRACK, BOOM, BAM! The top shelf of my entertainment center exploded, literally, at 6:30 this morning. It was horrible. This big crash, glass breaking. I thought someone had broken into the apartment. For a few seconds, I really thought our lives were in danger. It was terrifying. Once I realized no one was here, I just couldn't believe what I saw. I was like, WTH just happened here? You can call it what you want, manufacturer defect, heat from electrical equipment, blah, blah. I think I've got some bad spirits, karma, SOMETHING like that following me around right now. Think about it. I've never been sick a day in my life, never had a stitch, a broken bone. Never been to the hospital except to have Colby, then I get thyroid cancer. Colby had been out of the hospital for almost a year, then ends up in the hospital for 39 days. We get home from the hospital and my TV, dryer, cordless phone and now entertainment center are all broke and/or not working. Oh yeah, and the screwed up nursing situation. It's like a cloud of uncertainty and anxiousness is with me right now. I think these strange, for lack of a better word, "evil" vibes were pissed that my attitude was changing for the better. So they wanted to get my attention, hence breaking the entertainment center. Does that sound crazy? Of course it does, it came from my brain. But I've got news for whatever is causing the jacked up, weird, eerie force that is hanging around here. YOU WON'T WIN. Colby and I will. So you might as well pack your bags, get the hell out of here and bother somebody else.
Well now that I've convinced you I'm a total cuckoo head, there are good things going on around here, too. My sweet stepbrother and sister-in-law offered to put my stuff in storage up at their place. This will save me significant $$ getting my stuff out of my storage unit. Even better, my stepdad and sis-in-law came over, drove to my unit and packed up everything. I didn't have to do anything! Can't beat that with a stick. Plus my sis-in-law brought me pumpkin bread. I mean really, that kinda rocked. I appreciate them doing that for me. Let's face it, I'm not rolling around in extra cash around here.
Another wonderful thing in our lives, my friends are working on a benefit for Colby and me. There's a committee of 5 or 6 of my girlie friends pulling this together. They're putting together a whole day of events. Plans are still being made, but here's what I know for sure: Saturday, November 19th at the Sellersburg Moose Lodge (of course, where else would it be?!) Early in the day there will be vendors having a Christmas bazaar. Later on that evening there will be a silent auction and 2 or 3 bands playing. They just up and started planning it. Means a lot to me. I've been blessed with the bestest buddies on the planet.
Told you I was chatty tonight. Guess I've just got some nervous energy. Heck, I'm half afraid to go to sleep. What will break or explode next around here? Not much left, haha. I'll keep you posted. This crappiness has to turn around at some point. We're ready! Bring on the happy, happy sunshiny, no worry days, and hurry the heck up, lol. Nitey nite.
Friday, October 21, 2011
AND THEN THERE WAS NONE
Remember the great, fabulous, promising new nurse I trained on Wednesday? Remember how excited I was that she's coming this weekend to get more training and help me with Colby? She's to be here 6 hours on Saturday and 6 hours on Sunday. Well guess what, she's not coming. Yep, you heard it here first. Colby is out 12 hours of nursing this weekend. Is this my fault because I didn't turn in the proper paperwork in a timely manner? Noooooooo. Is this the nurse's fault that she is irresponsible, a schmuck or just up and quit? Nooooooo. This time around the fault lies with the nursing agency. Ah yes, that wonderful bunch of clowns I'm forced to deal with in order to get the nursing services I need for Colby. They don't have all her new hire paperwork done so I guess she's not allowed to come here or work for them just yet. So why in the hell did they send her out here to do orientation/training in the first place?! I think that's a legitimate question. I should have known better than to get my hopes up. NOTHING surprises me anymore when it comes to NOT getting the nursing care Colby needs. It's such a fucking joke, only I'm not laughing.
So what's my good, bright, sunshiny news for the day? I don't have any!! I'm in a pissy mood, which I think is most deserving. Well, I didn't crush anyone's foot with Colby's wheelchair, guess that's a plus. Screw it, going to bed.
So what's my good, bright, sunshiny news for the day? I don't have any!! I'm in a pissy mood, which I think is most deserving. Well, I didn't crush anyone's foot with Colby's wheelchair, guess that's a plus. Screw it, going to bed.
Thursday, October 20, 2011
NEVER A DULL MOMENT
So what fun, witty Russ anecdotes do I have to report today? I've got a couple. THANK YOU, Bonnie, for driving and taking me to my ENT appointment. Got my stitches out, scar looks pretty good. Dr just used the same scar from the 1st surgery. Dr told me there was no cancer in the right side of my thyroid. Bonnie was like, hey, that's great news. But you know, it never dawned on me that there might be. I just always assumed removing the right side was preventative. I never thought for 1 second there were cancer cells on the right side. Yep, still hanging around Denialtown. The ENT will set up an appt for me with an endocrinologist. I may not have to have the radioactive crap done, which would suit me just fine. Then all this stupid thyroid stuff will be done and over with.
Colby's speech therapist came over and worked her magic. The eye gaze is working again. She has also been helping my technologically-challenged brain with some pointers on Colby's iPad. We put a Spongebob app on it. Colby is fascinated with it already. I'll be hearing the noise from that app in my sleep tonight.
Mom watched Colby while I went to the dr, then stayed around and helped me get some stuff done. I decided Colby needed to sit up in his chair for a while, so we used the Hoyer lift. Things were going just fine, Colby was in his chair and we were trying to take the sling off. Some moron (okay it was me) left the wheelchair on. Mom was trying to get the sling off and accidentally bumped the back drive button. Then the chair proceeded to run over her foot and catch her ankle between the chair and the wall. Yeah, good stuff. I was about to shit my drawers. She says her foot and ankle are okay, but I don't know. Looked pretty darn painful to me. I felt awful that it happened. I'm so tired of not being able to pick Colby up. A couple more days and then we're done with this lifting restriction crap.
Then we take Colby in the living room. He's sitting up just in a white t-shirt and diaper because the bath aide was going to be here at 3:00 for his bath. Why get him dressed for a couple hours, right? Then Mom says, "uh Amy, there's a priest walking down the ramp." Craaaaaap! I totally forgot Fr. Jeff was coming over today. Is it written on my calendar, yes. Did I bother to look at my calendar today, no. He's new to the Cathedral and is getting out meeting parishioners. I've known about this for 2 weeks now. I said hey, come on in, the apartment is a mess and my kid is sitting around in his diaper. How lovely. I'm sure we made a fabulous 1st impression. Then I started telling him about Colby's 39-day hospital stay, then about my thyroid surgeries, then about my nursing issues. I bet he couldn't wait to get out of here. Think he'll invite himself back any time in the next year or 2 or 20?!
It's NEVER a dull moment around here as you can tell. Need to go hook up Colby's feeding pump for the night. Nitey nite everyone. TGIF is around the corner!
Colby's speech therapist came over and worked her magic. The eye gaze is working again. She has also been helping my technologically-challenged brain with some pointers on Colby's iPad. We put a Spongebob app on it. Colby is fascinated with it already. I'll be hearing the noise from that app in my sleep tonight.
Mom watched Colby while I went to the dr, then stayed around and helped me get some stuff done. I decided Colby needed to sit up in his chair for a while, so we used the Hoyer lift. Things were going just fine, Colby was in his chair and we were trying to take the sling off. Some moron (okay it was me) left the wheelchair on. Mom was trying to get the sling off and accidentally bumped the back drive button. Then the chair proceeded to run over her foot and catch her ankle between the chair and the wall. Yeah, good stuff. I was about to shit my drawers. She says her foot and ankle are okay, but I don't know. Looked pretty darn painful to me. I felt awful that it happened. I'm so tired of not being able to pick Colby up. A couple more days and then we're done with this lifting restriction crap.
Then we take Colby in the living room. He's sitting up just in a white t-shirt and diaper because the bath aide was going to be here at 3:00 for his bath. Why get him dressed for a couple hours, right? Then Mom says, "uh Amy, there's a priest walking down the ramp." Craaaaaap! I totally forgot Fr. Jeff was coming over today. Is it written on my calendar, yes. Did I bother to look at my calendar today, no. He's new to the Cathedral and is getting out meeting parishioners. I've known about this for 2 weeks now. I said hey, come on in, the apartment is a mess and my kid is sitting around in his diaper. How lovely. I'm sure we made a fabulous 1st impression. Then I started telling him about Colby's 39-day hospital stay, then about my thyroid surgeries, then about my nursing issues. I bet he couldn't wait to get out of here. Think he'll invite himself back any time in the next year or 2 or 20?!
It's NEVER a dull moment around here as you can tell. Need to go hook up Colby's feeding pump for the night. Nitey nite everyone. TGIF is around the corner!
Wednesday, October 19, 2011
MELTDOWN OVER
Wow, what a difference 24 hours can make. The 2nd nurse came for training today, and we like her too! She only stayed for 3 hours and is coming back tomorrow for another 3, so we'll see how it goes. However, the morning got off to a bad start. Mr. Colby was very gunky this morning. Put him on his shaky vest and before you knew it, his oxygen started dropping. By the time I stopped the vest, the bi-pap, the nebulizer and got him ready for a cough treatment, his oxygen was in the 40s. Really, Colby, seriously? Way to impress the new nurse! She didn't panic though. I kept saying, "He usually doesn't do this," along with, "This is the first time he's done this in weeks." Don't know if she believed me or not, but I guess we didn't totally scare her away. She said she'd be back tomorrow. Hopefully she will.
Then I got another call from a nurse who is interested in going to school with Colby. She would be able to do the schedule I want for Colby. Are you kidding me? Did we hit the freakin' lottery or what?! She's coming on Saturday to meet Colby. I'll interview her, see if I think she'll be able to handle it and go through Colby's school routine. I warned her it was going to be very involved and she would have a lot of responsibility. She seemed up to it, but only time will tell. So maybe my life isn't such a horrible tragedy after all? Perhaps.
Colby's teacher came today for home hospital schooling. They used his eye gaze. Not sure what was going on, but he wasn't really focused. Then the eye gaze was messing up, doing really weird stuff. We decided to blame it all on Colby's speech therapist. Way to go Amber, wink wink.
Get my stitches out tomorrow. Then the ENT will refer me to an endocrinologist to get the ball rolling on the radioactive iodine bullshit. So ready to get all this over with.
Had to pay my credit card today. Ouch, that was hurtful. It was $5.00, haha. Guess that's the good thing about being out of town couped up in a hospital, you don't waste much time or money shopping.
So I'm sure there were a few of you worried that I was having a complete meltdown after reading last night's blog entry. Well, you were right, I was pretty darn close. Yesterday was probably the worst day I had mentally in a very long time. Today was much better. And I'm hoping and praying tomorrow will be even better. See, that go-get-'em feistiness you're used to seeing from me is here, just hidden lately by a few minor complications. We'll get through this, one way or another.
Then I got another call from a nurse who is interested in going to school with Colby. She would be able to do the schedule I want for Colby. Are you kidding me? Did we hit the freakin' lottery or what?! She's coming on Saturday to meet Colby. I'll interview her, see if I think she'll be able to handle it and go through Colby's school routine. I warned her it was going to be very involved and she would have a lot of responsibility. She seemed up to it, but only time will tell. So maybe my life isn't such a horrible tragedy after all? Perhaps.
Colby's teacher came today for home hospital schooling. They used his eye gaze. Not sure what was going on, but he wasn't really focused. Then the eye gaze was messing up, doing really weird stuff. We decided to blame it all on Colby's speech therapist. Way to go Amber, wink wink.
Get my stitches out tomorrow. Then the ENT will refer me to an endocrinologist to get the ball rolling on the radioactive iodine bullshit. So ready to get all this over with.
Had to pay my credit card today. Ouch, that was hurtful. It was $5.00, haha. Guess that's the good thing about being out of town couped up in a hospital, you don't waste much time or money shopping.
So I'm sure there were a few of you worried that I was having a complete meltdown after reading last night's blog entry. Well, you were right, I was pretty darn close. Yesterday was probably the worst day I had mentally in a very long time. Today was much better. And I'm hoping and praying tomorrow will be even better. See, that go-get-'em feistiness you're used to seeing from me is here, just hidden lately by a few minor complications. We'll get through this, one way or another.
Tuesday, October 18, 2011
IDK ANYMORE, I JUST DON'T KNOW
I swear to God I don't know if I'd had a good day or not. Started out good, got crappy, got better. The new nurse, LOVE HER! Seriously, she's great. She wasn't intimidated by any of Colby's care. She has members of her family with special needs so she seemed really interested in Colby's equipment and how to take care of him. She picked him up and plopped him right down in that wheelchair, no problem. We had him out in the parking lot driving around and Colby showed her some stuff on his eye gaze, too. She's coming back Saturday (hopefully, we'll see how that goes, right?) Colby's other nurse was supposed to be here at 5:00 to watch him until bedtime. She had a family emergency and had to cancel. This isn't the nurse that I've been talking about having issues with, this is the other nurse we've had for years. I love her to pieces and feel badly for her. I'm praying for her family and hope things work out soon. But at the same time, I couldn't help but get upset that yet again another nurse has personal issues that untimately affect Colby's care. And at the current time, my overall well being is affected too, because I'm supposed to be taking it easy. I just about lost what little sanity I have left. I started thinking, what if I was really sick over here? What if I had really serious surgery? What if I was lying around in pain with tons of stitches? Where would we be, up Poop Creek without a paddle. This thyroid surgery isn't that big of a deal, thank goodness. Then I just made myself sick worrying about whether or not the nursing situation around here will get better. It's enough to drive you crazy. Crazier in my case. I have to have help around here, I'm a single mom for crap's sake. I need to work. Colby's care is very involved. I just flat out need help. Hate to admit it, but it's true, and I'm going to keep going through nurses and do whatever I have to do to get Colby the care he needs so we can get back to our "normal" lives.
Nursing issues are no big surprise for many SMA families. I've heard every story imaginable about bad nurses, stupid nurses, undependable nurses, difficult nurses, etc. It's just that at this particular time, I don't WANT a good nurse, I NEED a good nurse. Now I'm freaking out worrying about finding a nurse to go to school with Colby. What am I going to do about going back to work? I have to have a dependable babysitter. It's nervewracking. We have another new nurse coming tomorrow so we'll see how that goes. Keep your fingers crossed. I just have to have good, dependable nurses. It's hard enough leaving Colby sometimes, but I have to know whoever is here to watch him can focus on his care and not be caught up in personal stuff.
The day ended on a good note. I FINALLY got the wireless working around here. May not seem like a big deal to you, but I'm so glad to get that checked off my "to do" list. Colby's speech therapist had worked on it last week. Then I called the cable company and they reset something and it seems to be working now. Woo hoo! Now we can start doing some fun things on Colby's iPad and he can also get on the internet with his eye gaze. Also called the pulmonologist to get Colby's pulse/ox probe order faxed to a new medical company. Colby's bath aide came over. We got Colby cleaned up, unpacked his feeding supplies for the month. Dad brought the dryer back and I think it's in decent working order. Next on his "daughter do" list, find that pesky hubcap for the van.
Going to get some sleep and tackle whatever crapola the day brings tomorrow. Can't wait (sarcasm.) Nite all.
Nursing issues are no big surprise for many SMA families. I've heard every story imaginable about bad nurses, stupid nurses, undependable nurses, difficult nurses, etc. It's just that at this particular time, I don't WANT a good nurse, I NEED a good nurse. Now I'm freaking out worrying about finding a nurse to go to school with Colby. What am I going to do about going back to work? I have to have a dependable babysitter. It's nervewracking. We have another new nurse coming tomorrow so we'll see how that goes. Keep your fingers crossed. I just have to have good, dependable nurses. It's hard enough leaving Colby sometimes, but I have to know whoever is here to watch him can focus on his care and not be caught up in personal stuff.
The day ended on a good note. I FINALLY got the wireless working around here. May not seem like a big deal to you, but I'm so glad to get that checked off my "to do" list. Colby's speech therapist had worked on it last week. Then I called the cable company and they reset something and it seems to be working now. Woo hoo! Now we can start doing some fun things on Colby's iPad and he can also get on the internet with his eye gaze. Also called the pulmonologist to get Colby's pulse/ox probe order faxed to a new medical company. Colby's bath aide came over. We got Colby cleaned up, unpacked his feeding supplies for the month. Dad brought the dryer back and I think it's in decent working order. Next on his "daughter do" list, find that pesky hubcap for the van.
Going to get some sleep and tackle whatever crapola the day brings tomorrow. Can't wait (sarcasm.) Nite all.
Monday, October 17, 2011
YEP, OVERDID IT
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.
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.
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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