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.

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.

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.

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.

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.

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.

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.