THESE ARE THE FACTS OF OUR LIVES

Our Memorial Day weekend was great. Our week since then has totally sucked, but I guess sometimes you get the bad with the good. Suddenly I'm thinking Facts of Life - you take the good, you take the bad, you take them both and there you have…Well anyways, Friday I went out for a while. The weather was perfect. Ate outside, went for a walk, watched an outdoor concert. So nice to kick back for a few hours and have some adult conversation and fun (and adult beverages, yay Stella.) Saturday we had no nursing. Six nurses currently taking care of Colby, and we go a whole day without help? How does that even happen?! However, I'm not complaining! We had a great day together. Sometimes we need that one-on-one Colby/Mama time. Well, I don't know if Colby really needs/likes/wants it, but I sure do. He took a couple breaks off his vent, one for 1 hour 27 minutes and another one for 54 minutes. He is a stud! I couldn't stop watching the History Channel and all the shows they had on about WWII. I had Colby watch them with me. Colby needs to understand what being a soldier and serving your country means. As they say, freedom isn't free.

Colby's eye gaze is working again. For how long, who really knows. So I reprogrammed his TV channels for the umpteenth time. Wish I had a dollar for every times that's been done. It was 7:30PM and you know what that means, Jeopardy time! Yes, I also make Colby watch that with me. He needs to know something besides Bikini Bottom. I switched the channel to watch it. He got on his eye gaze and switched it back to Nickelodeon. I switched it back to Jeopardy, he switched it back to Nick. It was pretty darn cute. On Sunday I went back to his room. He was watching TV and had his eye gaze in front of him. I said Colby, I must kiss your face, it's just so cute. He looked at his eye gaze and said, "you're welcome." I just laughed and shook my head. He is such a stinker.  If it's something he WANTS to say or do on eye gaze, he'll get it done. If only he WANTED to spell or communicate his needs. Maybe one day.

Sunday we had a few people over for a fish fry. My dad goes on several fishing trips a year, so we always have a buttload of fish to use up. We had fried walleye and yellow perch, hush puppies, broccoli casserole, cole slaw and Rice Krispie treats (Dad's favorite dessert.) I ate until it hurt to breathe, but what else is new? Monday we had a nurse but only for 4 hours. So we had some more Colby/Mama time. I soaked in every second of it. I'm sure I got on Colby's last nerve. But that's what moms do sometimes, right?

Yesterday and today have totally sucked. Here are a few of the highlights. One of the nurses called off. One nurse totally forgot to give Colby a feeding. I mean just flat out didn't do it. He went almost 7 hours without eating! Oh good gravy, I was pissed. My mom and I took Colby swimming, and that was great. Colby loved it. Then we go out to get in the van and the steering column is all jacked up. Van won't go into gear, won't start, totally broke down. I've never had a vehicle break down on me, ever. Guess I was due, huh? Thank goodness for the old Terdmobile! That's right, good old Terdy to the rescue. I've been asking myself why in the world I don't sell that thing, well, now I know. I keep it at my dad's. When the going gets tough, call Daddy! He brought over Terdy so we could get Colby home. I kind of, sort of, snapped the headrest off Colby's wheelchair when we were loading him up. Told you it was a crappy day. But it's all good now! The white van is back, fixed, and Terdy is back at my dad's until the next time we have an emergency. The wheelchair dude came over after school and replaced the headrest. We rigged the headrest up with duct tape so Colby could go to school today. Don't think we didn't, because we totally did.

The countdown stands at 7 more school days and 28 more days until surgery. More info on that stuff later. I'm wrapping up this blog for now. It's getting long and honestly, I want to watch The World Wars on History Channel. No, I'm not making Colby watch this time. His nurse is getting ready to do his nightly cough treatments. Then we'll read a few pages of The Hobbit and go to bed. School tomorrow for him and work for me. Good night, blog readers. Peace out.

MAY IS ZIPPING ALONG THAT'S FOR SURE

I think we have the nursing situation worked out. Of course as soon as I say that, watch one of them quit tomorrow. People get this confused all the time, so let me explain it, again. We deal with 2 nursing agencies. One is the agency the school corporation uses. The other is the agency we use at home. They are NOT the same agency. Just because we have a nurse we like here at home doesn't mean I can send that nurse to school with Colby. She/he would have to interview with and get hired by the "school" agency, then that nurse could go to school with Colby. Clear as mud? It just so happened over the summer we had a wonderful nurse here at home. I knew she would be perfect to go to school with Colby, because that task ain't easy! So that's what she did. She worked 3 hours a day with our "home" agency, then she went to school with Colby and worked 5 hours a day with the "school" agency. The nurse that goes to school with Colby doesn't work for the agency we use here at home. So she goes to school with Colby and that's it. Currently we have 5 part time nurses through our "home" agency covering night shifts and weekends. As soon as school is out, one of those nurses will become Colby's full time, Monday-Friday nurse. Get it, got it, good.

I've also talked to our nursing agency about getting us extra nursing for when Colby gets home from surgery. Colby is on the Model II Waiver, which qualifies him for 16 hours of nursing per day. I've been told by several SMA moms that it'll take 2 people to take care of Colby around the clock for a couple of weeks once we're home. There will be a certain way to move him, transfer him, change him, etc. and apparently that certain way requires 2 people. Uh, well, hello, single mama here. I've been gently reminding the dude at the nursing agency to keep working on it. Squeaky wheel, you know. Haven't heard an answer yet, but I'm on it!

After a couple weeks' hiatus, Colby got to go swimming today. He didn't have school, as it was election day here in the fantabulous commonwealth of Kentucky (sarcasm.) My mom, God love her, volunteered to go with us and help. Actually it went well. Colby was really into it today, kicking those skinny legs like crazy. Guess we'll have to work on getting him back in the pool next week, too.

I had the best time over the weekend with some of my girlie friends. Eight of us went to Churchill Downs and made a day of it. Lots of food, booze and laughter was flowing all day long. We met here at the apartment and rode together. I might have maybe possibly made some sangria that we could have maybe started drinking around 11:30AM. Hey, don't judge. By the time we got home, my face hurt from smiling and laughing so much. I hope everyone had as much fun as I did. I'm going to make sure we do it again next year, too.

It's getting late. Colby is tucked in and I'm ready to hit the hay myself. The countdown for surgery is now 36 days. Ick. It's right around the corner. Barf. I'm not ready for this. Crap. Too bad, it's going to happen, God willing. And God willing, we'll get home in a reasonable amount of time after surgery with no infections or complications from the surgery. I'm thinking 7-10 days would be about right. And furthermore, God willing, we'll have extra nursing help to get us through a couple post-surgery weeks. Yuck. That's what I say about all of it. Just yuck and double yuck.

MONDAY MEMOS

Colby had a field trip last week to a Louisville Bats game. I thought it would be a good idea to go on this outing. #1-the nurse hadn't been on a field trip solo with Colby yet, and #2-I wanted to go to the Bats game haha. We had perfect weather and great seats in the shade. Colby actually watched and enjoyed the game. I figured he wouldn't want anything to do with it, but by golly he did. He hung in there for 6 innings, then was done. Started crying, which is his way of saying let's go home, Mom. I wanted to get him a Bats t-shirt so I headed for the gift shop. I just about had a meltdown there, had to buy Colby his first men's small shirt! There was no way that youth extra-large was going to fit him.
Ah man, my little boy really isn't so little any more. Makes me glad and sad at the same time, if that makes any sense. We had a great time, really glad I went.

Last Wednesday night I was awakened from a deep sleep around 3:30AM. There was some sort of domestic dispute in the parking lot, and there was a man yelling various profanities. And no, he wasn't yelling them at me. I wasn't to blame for this one this time, had nothing to do with it thank you very much. Scared the bejeezes out of me. Apparently it woke up a bunch of people because, yep, within 15 minutes here come the cop cars. No sirens but lights everywhere. Took me forever to get back to sleep. Damn stupid trashy neighbors. If anybody has $120,000, give or take a few grand, and is looking for a way to spend it, Colby and I need a 3-bedroom, 2-bathroom ranch house, like ASAP. I can have us packed and ready to leave this dump by the end of the day tomorrow!

Remember when I said I was having difficulties with one of the office staff at our nursing agency? Well, the poop hit the fan last week. I finally requested a meeting with the head honcho in the office. He came here to meet Colby and me, and we met for an hour. Get this, he admitted their office had some issues that needed improving. He admitted the staff there, in particular the doo-doo head I had been talking to most of the time, had several instances of miscommunication and non-communication. I said see, the nurses and I aren't crazy! Well, we are, but not about scheduling and what Colby's nursing needs are. So the doo-doo head in no longer working on Colby's case. The head honcho is personally handling Colby's case for a while. I'm praying for improvement. Good Lord, they couldn't get much worse. Wish I could get back all the time and energy I wasted on talking to doo-doo head. But I can't, so we'll just move forward, and it'll get better, hopefully.

The countdown is now Colby only has 17 days of school left, and most importantly 48 days until surgery! Time is flying by. Colby wasn't able to go to school today, his nurse called in sick. Of course I already had Colby more than half ready for the day when she text me to let me know her sinus infection wasn't any better. I said piss on this. I scooted Colby over in his bed, cuddled up with him, and we went back to bed for a bit. I've already gotten a text from Colby's school nurse tonight. She is feeling better and is planning on being here tomorrow.

I had a nice Mother's Day. It wasn't over-the-moon extravagant, but just spending the day with Colby was enough for me. It always is. Colby made me some sweet gifts at school, including a tissue paper stained glass ornament. Don't you love popsicle stick artwork, seriously, it's the best! He also made me a coffee mug with his picture on it. I went to Mass while Colby's fabulous father was here to visit with him. Then later that day Colby and I met my mom at Dairy Queen for ice cream. Mini Butterfinger blizzard with extra Butterfinger, please and thank you. Mom got her fav, a big, fat banana split.

That catches you up on the latest around here. It's 10:40 and Colby is back there jabbering away in his bed. If he knows I'm up, he can't stand it. Guess he thinks he's missing out on something. So that's my cue to hit the hay, too. More later. Good night, blog readers.

THESE TIMES THEY ARE A CHANGIN'

Just got a phone call from the infusion nurse. She'll be here tomorrow to do some blood work on Colby. He had his Zometa infusion last Monday, at home! As a gentle reminder, Colby gets infusions for his low bone density. You know, like post menopausal little old ladies do also. Usually Cincinnati Children's makes patients do this infusion at the hospital. There can be side effects, anything from minor flu-like symptoms to major respiratory reactions, and they like the patient to stay overnight for observation. Well, Colby has already has this infusion 3 other times. He has had very mild side effects, a slight fever and some overall "feel bads." So I convinced the endocrinologist Colby could do it at home. No way am I putting Colby in the hospital and exposing him to germs and other disgusting stuff this close to surgery. There is a LOT of coordinating that takes place with this. Insurance shipped the medication and supplies separately. Many, many phone calls among Cincy Endocrinology, insurance, Walgreen's Infusion and me. The infusion itself was a piece of cake. It took an hour to run the medication. Then he got fluids for 2 hours, and bing, bang, boom, done. The endocrinologist requires pre-infusion labs. No sweat, we had these done at Cincy when we were getting his other labs done for hematology. Colby also gets labs 2 and 7 days post infusion, all coordinated through Walgreen's Infusion. The 2-day post-infusion labs showed that Colby's potassium was a little low (bottom of the normal range is 3.5, his was 3.3). Endocrinologist said she wanted his potassium checked again the next day. More phone calls and coordinating, but if we weren't in Cincy it was worth it. The next potassium level was going back up, 3.9, winna winna. So tomorrow he'll get his 7-day post infusion labs and hopefully everything will be okey dokie. Colby won't be able to have another Zometa infusion until he is completely healed from surgery, so we're looking at October or November probably.

And here's the really crappy Colby news…one of our nurses quit. The only full time nurse we had, to be specific. She was also the nurse that went to school with Colby, to be more specific. She was very sweet and gave us plenty of notice, but it has been CRAZY trying to find replacements for her. There are 2 nursing agencies involved, the one we use at home and the one the school corporation uses. I've been on the home nursing agency for months anyway because we haven't had enough nurses to cover all the shifts. Now they also had to find a full time replacement for this nurse. Tomorrow will be the new school nurse's first day just her and Colby. She has been shadowing/training for several days, but now our nurse is gone, and this will be this chick's first day with Colby on her own. Yes, you can bet your sweet ass I'll be following the bus and spending the day in the classroom with them. I know she has worked at Colby's school before with another student there, so that eases my mind a bit. And while she was working last week with the other nurse Colby did have a choking episode, so she has experienced that and knows the proper way to treat him. But I'm still a nervous wreck. I can only imagine how Colby is feeling. But never fear, sweet boy, mama will be right there if you need her.

This weekend I've been training 2 new nurses to work here at home with Colby. Yeah, we've met 3 new nurses in the last week or so, like I said, it's been CRAZY. Colby is the most laid back, easy going kid you'll ever see. He just takes it all in stride. All these new people taking care of him, each in their own different little ways. I've said it before and I'll say it again, he is one super-duper amazing kid! Every bit of bullcrap from nursing agency employees, DME companies, nurse scheduling, infusions, phone calls, blah, blah, etc. Worth it! That sweet boy brings far more joy into my life than the other issues/problems that sometimes drag me down. Time for his tuck in. More blogging as I have the time and energy to do it. Adios, amigos.

WE HAVE THE OKIE DOKIE FOR SURGERY - OH BOY

I think I said over a week ago I would update on all of Colby's medical blah-blah. You know me, always running, just always running behind. It's been crazy, so I'll get to blogging and you get to reading.

Colby is READY and CLEARED for surgery. We went up to Cincinnati Children's last Thursday. First we met with the ortho surgeon to discuss what surgery would be best for Colby - VEPTR (rib) surgery or rod (spine) surgery. The decision is spinal rod surgery. The surgeon and pulmonologist agree it's not Colby's ribs that are messed up, it's his spine. It is curving inward. Their theory is fix the spine, and his airways will in turn be fixed also. It's pretty much 6 of one, half dozen of the other. Both surgeries take about the same amount of time to do (2-3 hours). The recovery time is about the same (10-12 weeks). So if they think spine surgery would better benefit Colby, who am I to argue? Plus, we were able to keep the same surgery date, June 25.   

Colby had to get spine x-rays also. Actually his curve really isn't that bad, only around 30 degrees. But we have to do something to get those airways on the right side opened up. Hopefully this spine surgery is the answer. Then we met with the hematologist. The dreaded hematology appointment. The hematologist really is a sweet old man, but seriously, I was going to throat punch him if he started some crap and tried to say that Colby has a clotting disorder. We only needed one blood test repeated, all the others were WNL. That's within normal limits for all you non-medical people. Colby's PTT was off the charts abnormal when we had it done from his port back on April 1. So we agreed that this time we would get a peripheral draw for the PTT. We also needed pre-infusion labs and it made sense to get them at the same time. They agreed to call VAT (vascular access team) to do the labs. We had to wait over an over for them to get there, but it was worth it. The lady from VAT was excellent. She found a vein in Colby's foot and got him accessed on the 1st try. Sweet! The normal PTT was the last piece of the puzzle we were waiting on to get cleared for surgery, and ta-da, it came back normal! However, Colby's ORSA test came back positive. Somehow I knew it would. No way this kid is ever going to be cleared from MRSA and ORSA. Just don't see it happening. What does this mean? It means every other day before surgery, for a week, he has to take a bath with special soap, hexachlorophene to be exact. We'll also get a prescription for some medication that we'll have to put it in Colby's nostrils twice a day for a week prior to surgery. Or was it 2 weeks? Whatev, I can't remember. I'm sure they'll tell me again.   

Once I knew Colby was cleared for surgery, I called and talked to the ortho nurse. I told her it was time to poop or get off the pot. Colby is ready for surgery. He's as healthy as he can be. Let's do this. I told her if anyone else's surgery gets cancelled, please keep us in mind and could we have their spot, moving Colby's surgery date up. So if I blog and say hey, we're going to Cincinnati in a couple of weeks, no it's not a joke, and no, it doesn't mean I've been drinking. Hopefully we'll get that call. We've been waiting for a year now for this surgery. Some of that was Cincinnati's doing, some of it was mine. I've accepted the fact that Colby has to have this surgery, and now all of Colby's specialist have given him the green light and all his labs are normal. No use prolonging the inevitable, correct?

So there's more stuff that has been going on with Colby, but I'm going to wrap this blog up for now. It's getting lengthy and I'm getting sleepy. Plus Colby needs tucked in, and I never miss the chance to do that for my sweet boy. More Colby news soon. He's a busy, busy boy for sure.