NURSING NEWS - NEVER GOOD IT SEEMS

Yes, it's been forever since I've blogged. Can't say that there's really a specific reason for it. We've been busy, as always. Haven't really been in the mood I suppose. Honestly, I don't know why I haven't blogged too much. I just haven't. Going to fix that now.

Let's talk about one of my least favorite subjects today: nursing. Seriously, I thought a few weeks ago nurses were certainly leading me to a nervous breakdown. Being 100% open here, I went into a “funk” for a couple of weeks. Not really sure if I was depressed, or overwhelmed, or had a case of the winter blahs, but there was certainly something going on with my emotional well being. We were having serious issues with BOTH the home health nurses AND the school nurses. Honestly, the phone calls back and forth to both agencies and the constant worrying I've had about finding new nurses, keeping the nurses we have, training new nurses only to have them quit, etc has been completely exhausting and has been going on for months. So not even worth the effort up until recently. I don't like to admit when I feel defeated and/or unable to find a solution to a problem, but I was definitely there emotionally for a couple of weeks. Family and friends would ask hey how's the nursing going, and I was like, please, I can't even discuss it! Every bad emotion you could have, I had it. Angry at the nursing agencies for not being able to recruit enough nurses. Furious with the nursing agencies when they sent out a nurse to train who ended up being incapable or a total fucking moron. Worried about having new nurses in our home, exposing Colby to them and how they would take care of Colby. Upset that my son qualifies for 16 hours of skilled nursing care per day in the first place. To summarize, it's been rough in the Colby nursing area lately. I started calling around to other home health companies to see if they could take Colby's case. Turns out in our area there apparently is a nursing shortage. Of the 3 agencies I called, only one seemed confident they could staff Colby's case. At least the other 2 were honest with me and said they didn't have enough nurses instead of taking on Colby's case only to under staff it. However, I stuck with the same nursing agency we've been using for over 3 years now, and it's slowly starting to get better, thank goodness! Honestly don't think I can take many more nursing issues. One day I will flip out and fire all of them in one sweep. Then where will we be? Nurseless and pissed off I suppose.

I'm at Colby's school today hanging out in the teachers' lounge, so you know what that means. Yep, training another school nurse. Going to school with Colby is very tricky. You have to know how to drive his power chair. Colby is maybe more likely to have a choking episode when sitting up and tires easily. Basically you have to be more alert with the kid when at school. We had an excellent nurse going to school with him 2 days a week, then another nurse (who is also one of our home nurses and excellent) going to school with him the other 2 days. The school nurse quit to take another job. Her last day with Colby was Jan 7, and we are just now getting the school nursing worked out! It is a never-ending battle! We had another school nurse start with Colby. After 2 days she quit. She said it was because she wouldn't be getting enough hours. Ummm, I'm sorry, didn't you know how many hours this job would be BEFORE you took it?! Such a waste of everybody's time. However, for the most part I believe things happen for a reason. Turns out the school nurse we're training now wants to cut back to part time hours. So maybe she'll be a good fit for Colby. She has caught on to Colby's routine very quickly. She's nice, professional, and doesn't seem to be carrying around a 10-gallon bucket of cra-cra. Fingers crossed this school nurse works out!

The home nursing situation hasn't been much better. We had a former nurse come back to work for us, only to have her quit 5 weeks later. One nurse they sent out here to shadow just wasn't a good fit for our home. In other words, we all thought she was nuttier than a fruitcake. They had 3 nurses “in the pipeline” to work with Colby. Great, fantastic, maybe things will get better. Oh my, don't be ridiculous! Of the 3, one quit the nursing agency completely. Said he got his “dream job” and after being hired, going through orientation and setting up a meet-and-greet with him, he quits the agency completely. Perfect. Just fabulous. Then they had another nurse with trach and vent experience in mind to work with Colby. You'll like her, they said. We think she'll be a good fit for your home, they said. Well, she never made it here because apparently she has some sort of torrid past and once the nursing agency got her background check, they wouldn't hire her. Even better! So that's strike 2. Then they call and say oh, we have a great nurse for Colby. He has worked for us for 5 years and has missed only 2 days of work. He “never” calls off. So he worked here days and guess what?! Oh yeah, you bet your sweet ass it happened, he called off for the next 3 days he was scheduled to work here due to a cold. Now of course I don't want anyone sick coming near Colby. Isn't just so odd that the dude who “never” misses work missed work during Week #1 of being in our home? Somehow I think the nursing agency needs to double check his attendance over the years. Jerkoffs.

But as of today, February 22, 2016, both of these new nurses are showing up and still working for us. I've gotten to the point where no excuse or reason a nurse gives for quitting Colby's case surprises me anymore. And yes, I know there are far bigger problems out here in this big bad world to have. I really do know that. Colby could be sick and in the hospital and we wouldn't need nursing. Or even worse, I wouldn't have Colby and none of this nursing stuff would be an issue at all. So of course I'll take the nursing problems over the alternatives. But for the love of corn, can we just catch a break and find a couple decent nurses who want to work, who aren't crazy and who will show up for their scheduled shifts with Colby?! Am I really asking too much?

Okay, I just had to vent and get all this negative nursing bullcrap out of the way. No more blogging about this stupid shit. Just praying that both the school and home nurses we currently have will stick it out for a while. My next blog will be more pleasant, more positive and about a totally different topic. Any other topic besides nursing, I promise.

FUNDRAISER WRAP-UP

Couldn't hit the hay without saying THANK YOU SO VERY MUCH to everyone to made our fundraiser a success last night. The Women of the Moose, what can I say, you all have always worked so hard to help us over the years. You ladies are awesomely awesome. Thank you to all who donated items. Thank you to those who mailed in donations. Thank you to auctioneer Todd Coleman for stepping in at the last minute when our original auctioneer fell ill. Thank you to all who attended and made the evening really fun. Thank you for spending your Tuesday evening with us and donating to our “get-us-out-of-a-dumpy-apartment-and-into-a-functional-house” fund. Almost $3000 was raised at this benefit – that's amazing! All proceeds from last night's auction and comedy show are going towards the materials needed to get our deck and ramp built. Thank you to Rolan Whitt and Mike Armstrong for making many of us laugh harder than we have laughed in a really long time.

Colby and I are lucky to have so many generous, thoughtful, caring people in our lives. Again, thank you to everyone for your continued support. And the great news is, I can blog about something different now besides the benefit! Not tonight, this mama is too sleepy. But soon. Good night everyone, and again, I sincerely want to say THANK YOU to those who have supported us through the years and especially through this incredible house journey over the last year. Good night.

FUNDRAISER REMINDER AND DETAILS - COME JOIN US

BENEFIT COMEDY SHOW AND AUCTION FOR AMY & COLBY

Tuesday, January 12, 2016

Action starts at 5:30pm

Comedy show starts at 7:30pm

Sellersburg Moose Family Center

1040 S. Indiana Avenue

Sellersburg, Indiana

COMEDY SHOW FEATURING ROLAN WHITT AND MIKE ARMSTRONG

Tickets are $12.00 each

If you are unable to attend, but would like to make a donation, please send to:

Amy & Colby’s House Fund

c/o Darrell & Nancy Shelton

919 Audubon Parkway

Louisville, KY 40213

Yes, I know it's cold outside. That's okay - the comedians will have you laughing so hard you'll warm right up! Yes, I know the fundraiser is on a weeknight. It was the only time we could get the comedy team booked unless we wanted to wait until spring. But what better way to break up a long work week than to join us on Tuesday night!

Just a little background information to explain why we're having this fundraiser: My son, Colby, was diagnosed with Spinal Muscular Atrophy (SMA) Type I, when he was four months old. SMA is a rare neuromuscular disorder that weakens his abilities to walk, speak, swallow and most of all breathe. Colby requires complete assistance with all activities of daily living. However, his brain is not impacted by SMA. Colby is a bright boy who enjoys socializing with others. Recently we purchased a fixer-upper house to get out of the tiny apartment we had lived in for 8 years. Over the last year, the house has gone through a complete transformation. It was gutted and redesigned to accommodate Colby's needs with items such as a roll-in shower, open floor plan, ramp to get into the house, whole house generator, wood laminate flooring and other amenities to improve Colby's quality of life. This benefit will help offset the nearly $50,000 in out-of-pocket costs needed to make the once rundown, old house into our beautiful, functional home.

These two comedians are well-known and perform across the country. Mike Armstrong was raised in Louisville. He gets a lot of his material from his experiences as a cop and from raising 5 children. He is a repeat guest on the Bob and Tom Show. I've seen him firsthand and trust me, this guy is hilarious. Rolan Whitt is also a Louisville native. He has worked with some of the biggest names in the business, including working as a writer for the former host of The Tonight Show, Jay Leno. While stand-up is his forte, he is a versatile performer who also does improvisation and hypnosis, apart from his comedy.

We're still collecting auction items if you have something you would like to donate. We've collected many great items so far, but my computer isn't cooperating and currently won't upload photos! I'll try again tomorrow. 

Thanks to everyone who has donated and thanks to everyone who is planning to attend on Tuesday. See you then! 

FUNDRAISER DETAILS - PLEASE JOIN US IF YOU CAN! IT'LL BE A GREAT NIGHT!

BENEFIT COMEDY SHOW AND AUCTION FOR AMY & COLBY

Tuesday, January 12, 2016

Action starts at 5:30pm

Comedy show starts at 7:30pm

Sellersburg Moose Family Center

1040 S. Indiana Avenue

Sellersburg, Indiana

COMEDY SHOW FEATURING

ROLAN WHITT AND MIKE ARMSTRONG

Tickets are $12.00 each

If you are unable to attend, but would like to contribute a monetary donation, please send to:

Amy & Colby’s House Fund

c/o Darrell & Nancy Shelton

919 Audubon Parkway

Louisville, KY 40213

Colby and I have a longstanding history with the Sellersburg Moose Family Center. My dad/Colby's grandpa has been a Moose member since 1984. The Moose has held several fundraisers for us since Colby was diagnosed with Spinal Muscular Atrophy (SMA) Type I, when he was four months old. SMA is a brutal, rare neuromuscular disorder that affects Colby's abilities to walk or even sit up, speak, swallow and most of all breathe. Colby requires complete assistance with all activities of daily living. However, his brain is not impacted by SMA. Colby is a bright, yet stubborn, young man who enjoys socializing with others. Recently we purchased a fixer-upper, as-is house. Over the last year, the house has gone through a complete transformation. It was gutted and redesigned to accommodate Colby's needs, including a roll-in shower, open floor plan, ramp to get into the house, whole house generator, wood laminate flooring and other amenities to improve Colby's quality of life. Donations from this benefit will help offset the nearly $50,000 in out-of-pocket costs needed to make the once rundown, old house into a beautiful, functional home for us.

Mike Armstrong will have you laughing so hard you'll be crying! He is a very kind and generous man who also happens to be hysterically funny! This is Mike's second fundraiser for us at the Moose, and we are so grateful to him for agreeing to help again. He is a local boy, raised in Louisville. He gets a lot of his material from his experiences as a cop and from raising 5 children. He is a repeat guest on the Bob and Tom Show, and he performs all over the country. We are very lucky and excited to have Mike participating in our fundraiser this month! Rolan Whitt is also a Louisville native and a comic national headliner. He plays rooms all over the country and draws some of the most enthusiastic crowds you’ll see. He is now based out of Sin City, Las Vegas. He has worked with some of the biggest names in the business, including work as a writer for the former host of The Tonight Show, Jay Leno. While stand-up is his forte, he is a versatile performer who also does improvisation and hypnosis, apart from his comedy.

Please join us on January 12. These comedians will help you beat the winter blues for sure. And who knows, you just might find that special item you didn't get for Christmas at the auction. Hope to see you then!

LIFTS, LIGHTS, LOVING THIS HOUSE

My absolute favorite trim carpenter/handyman got some major stuff done around here through the week. The living room TV and sound bar are now mounted above the fireplace. Beautiful. He also framed out and installed the side door to the garage. We still need the 2 big garage doors replaced, but at the moment there is too much stuff in the way! My mom and I have spent numerous days and hours working in the garage trying to get it cleaned out and better organized. We're pretty close. I think a couple more hours and it'll be ready for Cunningham Door to come and install the new doors. The biggie to get done is the deck and ramp. Yep, this project is still not done. I'm not sure what went wrong at the company that said they would donate the deck and ramp. First we were told it would be done mid-August/September. Then we were told the job would be done before we moved in mid-November. Well, it's still not done. Just not happening with this company I guess. I can't get mad though, when I think of all the materials and labor that were donated and did actually happen. As a matter of fact, we have another organization that has offered to do the deck and ramp. That's exciting news! Not getting my hopes too high, but it sounds like they want to get started soon. Hoping to meet with them here at the house on Monday to talk about it all, and we'll take it from there. Fingers crossed it actually happens this time!

The other biggie that did get done this past Wednesday - we got the ceiling lift system installed in Colby's room. Oh boy, oh boy, oh boy! It's wonderful!! Fantastic! Freakin' awesome! See pic below. It has made transferring Colby in and out of bed to the wheelchair and the shower sooooo much easier. Love it, absolutely love it! We made do at the apartment, but this house has opened new, easier ways for us to take care of Colby, and I'm so very grateful for that. It just gets better and better around here as our to-do list for the house gets smaller and smaller. Hoping to get all the biggies done by the end of the year.

Let me tell you what my sweet, yet sometimes rotten, child did. I got a text from his school nurse Friday saying Colby's heart rate was high. Like 140. That's waaaay too high. They put him on the changing table and let him rest. Tried to get him back up in his wheelchair. HR went up again to 120-130. Then the nurse text and said Colby was crying. So of course I'm thinking he's sick, maybe a headache or maybe working on a plug. Hard to know really. But I couldn't let me sweet boy at school with a high heart rate and crying. So, right in the middle of working on the garage, I left to pick up Colby and the nurse. The nurse said the moment he told Colby I was coming to pick them up, the tears stopped and his HR went down to normal. Are---you---kidding---me?! So basically Colby played all of us Friday with his fake high HR and fake crying. Of course he was fine the rest of the day. No problems whatsoever. We took him to Great Clips for a haircut, no problems. Gave him a shower, no problems. He is such a stinker sometimes! I didn't know whether to laugh at him or get mad. I just shook my head and went on.

We're watching Elf. Every line of that movie is my favorite line! “The best way to spread Christmas cheer is singing loud for all to hear.” “We elves try to stick to the four main food groups-candy, candy canes, candy corns and syrup.” “You're a cotton-headed ninnymuggins.” I could go on and on. I took Colby out around dusk for a walk to look at some Christmas lights in the neighborhood. We love where we live! We're so happy here. I know I've mentioned that a time or two, but this house is truly wonderful and a perfect fit for us.

Better get going. Colby is looking sleepy and still needs trach care and teeth brushed. And I want to watch the rest of the Iowa/Michigan State game. Hopefully tomorrow I can find some time to drag out some Christmas decorations. 

This lift system makes transferring Colby much safer and easier. It's the bees' knees!

HOW HAPPY ARE WE RIGHT NOW? VERY, VERY

We are just as happy as can be around here. All is well and right in this mama and sweet boy's worlds. Last week we hosted Thanksgiving. I think there were 20 of us. No way we could have ever gotten half that many in our former apartment. Guests included my parents, aunt, cousin and his family, brother and his family, longtime friends of the family and a couple of Mormons (long story.) The food was delicious and the company was fabulous, too. I was so glad to be able to host a holiday at our home instead of having to pack up all of Colby's stuff and travel with him. So much easier on Colby and me if everyone comes to us. We divided the cooking chores among ourselves. Only thing I had to make was my famous, super yummy carrot cake. Somehow we ended up with a ton of extra turkey. Guess my dad should have only fried up one and not two! Oh well, don't think I didn't Ziploc baggie up the extra and throw it in the freezer, because I most certainly did. I would love to learn how to make yeast rolls between now and next Turkey Day. We'll see. Not like I can't find enough stuff on any given day to keep me busy and practically cra-cra. Still don't have everything right where it needs to be. Took me forever to find the potato masher on Thursday. But eventually it showed up, just like my checkbook did after being MIA for over a week. I'll be very glad when things are a little more settled and organized around here. We've made leaps and bounds in those categories, just need to keep pressing forward until it's all done.

And, as of today, I am officially a homeowner again! After almost 9 years of being in an apartment, I am now the proud owner and mortgage payer to the most perfect and beautiful home for Colby and me. The original plan was to put Colby on the bus at 9:15. Nancy and Darrell were going to pick me up at 9:30 and we were going to ride together to the closing. Nope, NEW PLAN! Colby's nurse called off sick today, so he wasn't able to go to school. Called Nancy and Darrell and said hey, guess what, kid is going to the closing with us! No problem. They were very helpful in loading Colby's equipment and getting Colby into his wheelchair. The closing was a breeze. All the papers were drawn up. Everybody knew what was expected and bing-bang-boom, 20 minutes later I had signed the mortgage papers. Also got my homeowner's insurance all lined up and an amortization schedule for payments. Hopefully I'll be able to pay some extra towards the principle here and there. That's my hope anyways. Talk about Santa coming early. I bought a house! I had thoughtful, generous, caring people to help me get it upfront, along with tons of donations of goods and labor to get all the work done, but yes, I'm a homeowner again and man, does it feel awesome. Colby and I are truly blessed beyond words to have this opportunity.

I was trying to get Colby to watch Supergirl. I thought he would like it. You know, cute girl in a cape flying through the sky saving people. Nope. I can hear him down there fussing like crazy. Better go change the channel before he sets off his high heart rate alarm! More soon. Again, please, please know that if you donated to our house fund in any way, how very much it's appreciated. I love this house. Absolutely love everything about it. Colby and I are so happy here. Thank you, THANK YOU, THANK YOU to everyone who took an interest and helped along the way. Every time I look around the house, I am reminded of how much help we received to get us where we are today. I am feeling the love, that's for sure.  

Last Wednesday, Colby was helping me make carrot cake by using his switch to run the mixer. 

The gang's all here. Turkey Day 2015.

 

 

 

 

 

 

 

 

 

 

 

Signing the mortgage for our house today! 

 

 

 

ANYBODY ELSE GOT THE MONDAY BLAHS??

Well, I should be going through this mountain of mail that has piled up over the last couple of weeks. It looks daunting, indeed. Instead I've been goofing around on Facebook and totally not doing what I should be doing. Imagine that!

Sent Colby to school today. He is better, not back to 100%, but much better. His secretions are still yellowish but he seems to act like he feels fine. A big determining factor for how Colby is doing is how well he tolerates sitting up. Saturday he sat up for 2 hours and yesterday he sat up for a little over an hour, both times with no problems. So I thought he would do okay at school today. When the nurse was doing his CoughAssist treatment, Colby coughed up a large hunk of something. His oxygen dipped down to 49. Yes, it happens that quickly! But then as soon as the nurse suctioned his trach and removed it, his oxygen stabilized. Since then he's been just dandy. I assume an oxygen drop like that wears Colby out, so I strongly encouraged him to take a nap today. In other words, I turned off the TV and lights, scooted him over in his bed, and curled up next to him. I don't care if he's 13 years old, you're never too old to snuggle up with your mama! We had 25 minutes before his afternoon respiratory treatment was due. Perfect for a quick nap. Nope, not that kid.

Had a follow-up endocrinology appt today. I had my blood drawn at my dr appt last month with my family doctor. Of course they were supposed to send the results to my endocrinologist. But did they?! Noooooo. Family doctor had called to say my levels were high and to cut back on my levothyroxine dosage. Uh no, I'll follow my endocrinologist's advice, thank you. So as soon as she gets the results, she'll call and let me know if we need to make any changes. Seems like we've been constantly changing my dosage since having my thyroid removed. I just want my energy level to return halfway to normal. Tired of being tired all the time. Need to get more focused on taking better care of myself. Yeah sure, I'll squeeze that right in. Eventually it's going to have to be a priority, but I swear, right now I can't handle the thought of one more thing to keep track of and/or do.

They came today and finished hooking up/turning on the whole house generator. Oh my goodness, I'm so relieved to have something like this as a backup for Colby. With all of Colby's medical needs, a backup generator is pretty much a necessity. At the apartment, if it started storming or icing, our backup plan was plug everything up and just pray the electric stayed on. The generator was paid for by the Molly Johnson Foundation, and Corrigan Electric donated the labor for getting it installed and up and running. What piece of mind we'll have if the electric goes out! This has greatly approved our quality of life and is much appreciated.

I'm at the kitchen table typing this, listening to Colby's nurse talking to a new nurse who is training/shadowing here. Yes, I agreed to letting yet another nurse come here and help with Colby. Honestly, it's against my better judgment. I counted it up. In the last 12 months, we've had 14 nurses come to our home to take care of Colby. And of those 14, do you know how many are still with us? The original 2 we had at this time last year. Holy shit on a shingle, are you freaking kidding me?! I don't know if she'll work out of not. Honestly, I'm just not in the mood to deal with someone else taking care of Colby at the present time. Blah. If there wasn't so much to get done around here, I'd probably tell the nursing agency to stick it where the sun don't shine.

We'll be scheduling the house closing very soon! In a matter of a couple of weeks, I'll be a homeowner again. So exciting! I'm in the process of shopping around for homeowner's insurance. We'll also get the utilities changed over to my name sometime this week. Baby steps. Slowly get there, but we are getting closer to being moved, settled and officially homeowners!

Okay, now that I've wasted some time blogging, think I'll go watch some of the Bengals game. Maybe at halftime I'll get some mail sorted. Looking doubtful! Very doubtful. But you never know, I may get a burst of energy to get something done. Bye for now.