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.
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