BRONCH AND BS

Took Colby to Cincinnati Childrens today for his annual broncoscopy. Grandpa Kenny was kind enough to volunteer to take us. I had to turn off Colby's feedings at 3:15am. Started him on Pedialyte and apple juice and turned that off at 7:15. My goal was to hit the road between 7:30-7:45, and we pulled out of the drive at 7:40. Nice. We didn't have to be there until 10:15, but I didn't know how traffic would be, so I felt the need to leave a little early. Everything went easy peasy. Colby was very anxious (loud and jabbering) when we first got there. He eventually calmed down. Actually he was awesome the whole time. He's such a trooper! His procedure was done right on time. The pulmonologist said Colby's trach, stoma and lungs all looked “pristine.” That's what we like to hear! Colby had to spend hardly any time in the PACU. By the time we got back to see him, he was already awake and alert. The ride home sucked! The roads were horrible. Colby's head flew out of his head piece several times because we hit so many huge bumps, pot holes, whatever it was. So yeah, I'll be following up on that new head piece for Colby's wheelchair tomorrow. Glad this appointment is done and off the to-do list.

Colby's next Cincy appointment is on March 15^th for his 5^th dose of Spinraza. Ok, let's talk. As of right now, it's tentative that he will actually get the procedure. And I am one pissed, stressed, worried mama at this point. Colby's health insurance changed February 1 from Humana to United Healthcare. Humana had approved all of Colby's loading Spinraza doses without too much trouble. United Healthcare, however, not so much. They are saying that Cincinnati Childrens must order Spinraza from their vendor, Accredo. The Cincinnati Childrens higher-ups are saying no, you can't tell us where to buy our drugs. So there you have it. When I first heard this news last week, I flipped my lid. Actually it's more like I shut down. Shoved and tucked all that worry and emotion waaaaaay down deep. But now I'm wearing my big girl panties and am ready to take on this next challenge. I talked to the drug rep for Biogen, the company that makes Spinraza. She helps families navigate insurance, Medicaid and Biogen to get the drug approved for SMA patients. Now that she is aware of what the United Healthcare issue is, she's on it. Just knowing that someone out there can help me get this drug and the procedure approved for Colby is a huge relief. She absolutely talked me down off the ledge yesterday. She didn't promise me it would all be approved by March 15^th. But she said Cincy and United HC are negotiating to get this issue resolved. She heard maybe by April 1. She told me this is well within the amount of time Colby can receive his next Sprinraza dose. So I'm trying to stay calm. I'll follow up with her later in the week to see how things are going.

Yesterday I worked and Colby went to school, and that's been our week so far. I'm keeping Colby home from school tomorrow. Give him time to get all the anesthesia out of his system. Currently I'm on the couch watching “This Is Us” and the nurse is getting Colby ready for bed. The rabbit and cat are hilarious this time of night. The cat will jump up on the couch with me. The rabbit will jump up on the other side. This freaks the cat out, so she'll jump down. Which freaks out the rabbit, who then jumps down also. I'm just glad they're getting along. Charlotte is still leery of Colby. I think she needs some time to get used to his machines and tubing. But I pick her up and take her to Colby every day so they can get better acquainted. Hoping one day I'll go in Colby's room and see the two of them all snuggly in his bed.

Time to wrap this up, tuck in Colby, feed the fur babies and go to bed. More blogging soon.

SERIOUSLY, THANKS FOR CARING

Looks like it's been a week since I've blogged. Honestly, I thought it was 3 or 4 days. Shows you how well I keep track of time. So what is best? Give a quick update to what we've been doing every day for a week? Just write about the last couple of days? Or forget updating everyone on what we're doing and blog about whatever pops up in this brain of mine. I guess there isn't a right or wrong answer. I do enjoy doing this blog. And I think there are some people out there who actually enjoy reading it – go figure! Mostly my mom and best friends, haha, but that's ok. I know there are people out there who like to know what Colby and I are up to, making sure we're surviving this circus that is our lives. Yes, we are both doing just fine currently. And believe me, I know that could change at a moment's notice. I try very hard to not take the good, ordinary, uneventful days for granted. It's easy to get hung up in the BS of daily life. Especially when Colby's care is so involved and I'm doing much of it solo. Yes, we have nursing help. But trust me, that can be a whole other set of circumstances and problems. And yes, I have tremendous support from my parents and friends. Without their constant support, love and confidence in me that I can actually do this single mom to a medically fragile kid gig, I would've dissolved into a huge puddle of goo long ago. It takes a village has never been more appropriate when it comes to sweet boy and me!

By the time this past Sunday rolled around, you could stick a fork in me, I was done. Tired, just darn tired. Colby's feeding pump went off around 6:30am. I got up and turned it off. Unlocked the front door. Texted the day nurse to come on in and that I was going back to bed. I don't do it often. I always think I can get this and that done while the nurse gets Colby up for the day. Not that day. Slept in until 9:30am! It was a thing of beauty. Then I did 4 loads of laundry and watched the Patriots LOSE the Super Bowl. Woot woot! And of course stayed up to watch This Is Us. Ohmygosh, if you're not watching this show, what is wrong with you? It's soooooo good. I didn't cry at all during the episode, so I guess that's confirmation that my heart has turned completely to stone. I also spent a great amount of my time following after Cupcake, picking and wiping up her little pees and poops. I don't know what is going on with this damn rabbit! She used to be so good at using her little box or chux pads. Now she's just letting it land wherever she happens to be. Driving me nuts! I bought “Rabbits for Dummies at Christmas for Colby and me to read so we would be better bunny owners. I've read about 80 pages so far, but haven't gotten to the part about litter box training. I thought we had this under control but obviously not. Time to skip ahead to that chapter. Good thing she's cute!

Yesterday Colby went to school until 12:30. Then I picked him up and we met his PT at the pool for swimming. Colby hasn't been swimming yet this year, so I know he enjoyed it. Last night he fell asleep within minutes of us tucking him in. Today after school he gets his port flushed, and Tuesdays are also bath days. Colby's regular nurse for Tuesday PM called off tonight. Luckily they were able to get one of Colby's other nurses to cover the shift tonight. Her regular Tues client is out of town, so she happens to be free tonight. I can certainly give Colby a bath by myself. I've done it many, many times. But I cannot tell a lie, it's much easier with some help. I said I was going to dedicate February to working on Colby's eye gaze. Getting some pictures on it, learning more about the technology of it and what it can and can't do, etc. Yep, it's on my to-do list. There's still plenty of February left so I'm not panicking yet.

I'm going to hop off here and get my shower before Colby gets home from school. This is the 1^st Tuesday in a long time I haven't worked that 2^nd job. I'm enjoying doing chores around the house and not being so rushed. I'll miss the extra money for sure, but like I said, I need sanity too. More blogging soon, peeps. Thanks for reading this and for taking an interest in our lives. We live “differently” from most, but that certainly doesn't mean we're not happy. Colby, Cupcake and I are snug as bugs in rugs around here. Looking forward to a more laid back week and some down time with my kiddos.

FULL DAY FOR US

Colby has had his IPV treatment and is getting tucked into bed. Cupcake is hanging out in front of the fireplace, gnawing away at a chew toy. Hey, at least it's not the wood trim. I'm poking around Facebook and not watching the president's speech. Just not feeling it. I'll catch the highlights on tomorrow morning's news. 

Colby had school today. Yes, he's still in school even though it's winter and cold/flu season. I'm sure many people think I'm completely cra-cra for sending him to school right now. They may be right. Supposedly the flu peaks in February. I may up and one day decide to put him on home/hospital for a few weeks. Just depends. Once he was on the bus, I headed to my second job. Yep, more proof I'm completely nuts. I've been working at a law office since before Thanksgiving. I don't know what I was thinking taking on another part time job. Oh wait, now I remember, I need the money! But it got to be too much. Too much driving back and forth. Too much time away from home not getting stuff done. So today was my last day there. It's bittersweet. I liked the people I worked with and the job. I certainly like the extra money. But Colby comes first, and there are times I just need to be at home to make phone calls, schedule appointments, get Colby to PT/OT, clean, etc. I'm hoping the law office calls me to work there occasionally. Or I really hope I win the lottery.

I got home from work about 7 minutes before the bus got here. The nurse and I got Colby out of his wheelchair and into his bed. I stretched him out and put on his hand splints. Then I headed to the gym. Yes, don't laugh, I go work out sometimes. Then as soon as I got back, the evening nurse and I took Colby up to Great Clips for a hair cut. He needed it – his hair was looking funky! Then we gave him his Tuesday night shower. He was doing his eyegaze after that. His thing now is YouTube. He'll bring up the internet on eyegaze and go straight to YouTube. Then the craziness begins. He'll open YouTube over and over again, so there are multiple Spongebob, Sesame Street and Veggie Tales running at once. It's enough to make me want to jam rusty ice picks in my ears. So today was a very full day for Colby. We just got him tucked in and he's already about to fall asleep. Most nights he stays up until around 11. I'm not far behind. I need some QT time with the bunny, a shower, then I'm heading to bed. Tomorrow Colby has school and I have my first job. Yep, really need to win the lottery. Good night.

WHEELCHAIR WOES FIXED? Hopefully

Waking up at 4:15 is not how I like to roll. Getting up at 5am is definitely not how Colby likes to roll, either. But we did it. Did an up and back trip to Cincinnati Childrens today. Fingers crossed, I think we have solved the wheelchair head piece dilemma. Colby tried a Savant head piece, and we were all pleased with the fit and support it offers Colby. So NuMotion will order the Savant and return the Stealth. Same old blah-blah. Papers have to be signed by a doctor. Paperwork has to be submitted to insurance for approval. I'm not sure how long it will be before we get the new head piece. The guy from NuMotion said well, you can pay for it out of pocket and you'll get it much faster. I gave him the look of death and said yeah, right. Price is roughly $550. Think we'll just wait for insurance or Medicaid approval, thank you very much.

Then we went aaaaaaaaall the way to the opposite end of the hospital so Colby could get labs drawn. I told that bimbo to call for the Vascular Access Team, but noooooo, she said she could access Colby, no problem. And do you think she accessed him? No. She got one chance. After she couldn't do it, I was furious. But I had on my big girl panties and calmly asked her to page VAT to do the blood work. VAT brings an ultrasound machine so it's much easier to get access on someone like Colby. Long story longer, the blood work is done. The neurologist also ordered tests that require a urine sample. We tried to collect it while at the hospital today, but that was a no go. So I'll have to get an order from the neurologist and find somewhere to take a sample for testing this week. I get to have all the fun, huh?

I have big news. Really big, super big news. I'm getting another cell phone. That's right, the time has come for me to put my iPhone 4 out of commission. A friend of mine gave me that phone over 3 years ago. It's been real and it's been fun, but that phone has to go. I don't know whether to laugh or cry at how very slow it runs. I can't download apps on it. Often it tells me I have no more storage. I could go on and on about the issues of having a phone that old. Well, we'll see. I'm very technology stupid. I'll probably get intimidated and chicken out in the next couple days. But as of right now, I'm doing it!

Time for The Good Doctor. Must go. More updating soon.

WHEELCHAIR WOES

The good news is Colby has his new power wheelchair. We went to Cincinnati Childrens in August and got it all lined out. There are many, many things to consider when ordering a wheelchair for someone as medically complex as Colby. First he was going to get the newer model wheelchair. Then I was told the tray that slides onto this wheelchair would be permanent. Nope, won't work. I have to be able to take off the tray to get Colby in the van. So we were able to get the same style of wheelchair Colby had before with new seating, arms, head piece, etc. Colby's chair was delivered December 28^th, which is amazing! We've never gotten a wheelchair that quickly before. It has to go through insurance, which always denies it. Then it goes to Medicaid for approval. Once it's approved, then it has to be ordered and built. So getting the wheelchair within 4 months really is incredible. The bad news is we've had some problems with it, especially the head piece. Of all the parts and pieces Colby needs to work properly on that chair, it's the head piece that's THE most important. We (two wheelchair dudes, PT, and whoever else wanted to take a crack at it) have worked hours on that damn thing. I'm ready to roll that chair in the Ohio and watch it sink. My opinion is the head piece was fault from the start, which is hard to believe because both his old and new head pieces are made by Stealth. Not sure how we had such good luck with the one on his old chair and such bad luck on the one on his current chair. Actually we've been using the old head piece on his new chair because the new head piece is that crappy. Lovely.

So that will be appointment #1 tomorrow. We'll leave here around 7:30 tomorrow and go to the Perlman Center to get this wheelchair looked at and hopefully fixed. After that, Colby's appointment #2 will be getting labs drawn. Unfortunately they need to be drawn peripherally, meaning they will have to stick him to get the blood. They aren't able to draw the blood from his port because they need to do a PT and PTT to look at his clotting factors. You can't do this test with blood from a port because there is heparin sitting in his port, and that will mess up the clotting factor values. I hope this peripheral draw goes as easily as the one he had done at Cincy in December. I had the lab technician call the Vascular Access Team, who brought an ultrasound machine to find the best spot to access Colby. One stick, which is fantastic. Hoping for the same tomorrow. Then we can head home. Really hoping to be back on the road and home before afternoon traffic starts getting crazy.

I don't know if it's proper or not to ask for prayers for a wheelchair, but I am. Really hoping the Savant or the HeadPod that Colby tries tomorrow is the solution to his head piece issues. I'm not giving up until we have this resolved. Can't have sweet boy's head not properly supported. We'll see.

CINCY VISIT HIGHLIGHTS

I was told over Thanksgiving that I needed to do a blog update. Well, here I am 4 days before Christmas, doing just that. Actually I'm just going to update on Colby's recent Cincinnati Children's visits.

My dad, a nurse and I took Colby to Cincy on Tuesday. He had one appointment that day to meet his new endocrinologist. Well that didn't happen because she had her baby the day before. We met with some other endocrinologist and discussed Colby's recent DEXA scan. One of the 3 measurements they take was improved – the other 2 not. Colby is going to continue his Zometa infused for another year or so, then we might discuss him taking a break for a while since the medication isn't really helping to improve his bone density. However, it is helping to prevent bone fractures, and that's our main goal.

Yesterday we had to be back at the hospital at 7:30, yuck. Colby's first appointment was with ophthalmology. Colby's prescription has only changed slightly. Basically it has gone from 20/20 to 20/25 if we keep his current glasses, which is what we're going to do. That's what the eye dr suggested. I asked her about Colby getting contacts. I said I would be the only one to handle them. I certainly don't expect the nurses to go sticking their fingers in Colby's eyeballs. But the ophthalmologist said because Colby has astigmatism, she doesn't recommend contacts. Something about he doesn't blink enough, and contacts that you wear with astigmatism you need to blink a lot. Something, something, blah, blah. Next we headed to the lab where Colby had to get a peripheral blood draw. I requested they go ahead and call the Vascular Access Team since Colby is a horrible stick. She used an ultrasound machine and was able to access Colby on the first time. Yay! They drew 8 vials of blood, plus Colby had to give a urine sample. What I thought would be a horrible experience ended up being easy-peasy. Then we went on to pulmonary lab to test Colby's vent settings. That was painless, and I was even able to get some vent connectors from them. Score! His last appointment yesterday was PT. They evaluated Colby to see if he has made any improvements since being on Spinraza. Well duh, we all know Colby has done amazing things while receiving this drug. Unfortunately, the increased movements we're seeing in Colby don't add up to points on their scales. I'm calling bullshit! But they made notes about Colby having a better heart rate, vocalizations, stamina, etc, along with their PT measurements. I don't care what they say, in my books he has done wonderfully on Spinraza, and I won't let any test tell me different. We were all over that dang hospital. Started in Section E, then A, then C, then back to A. Very busy, very exhausting day by the time it was finished.

Today we went to Neuro Clinic. Meaning we show up, get Colby comfy on the exam table, then all the doctors come to us. Ah, much easier. Colby saw the nutritionist, rehab doctor, pulmonologist, and neurologist. We're going to tweak Colby's formula recipe a bit, both calorie and fluid intake adjustments. No vent settings changes at this time. Then we hightailed it down to Ortho Clinic. They took x-rays of Colby's spine. Every time I see those, I'm amazed at the amount of hardware running down my kid's back! X-rays were fine, no worries. Thank goodness.

Got home about 4pm. Got Colby settled and most of the unpacking done. I'll work on that some more tomorrow. The rest of the night involves not much. Colby is in his room doing YouTube on his eye gaze. I'm lounging on the couch in front of the fireplace, yelling at Cupcake when she tries to reach up and eat my houseplant. I'll blog again soon and fill in the last couple of months. Yep, I'll get right on that.

Ok, I'll try.

OCTOBER OCCURRENCES

Hey, guess what! You're going to be shocked to read this, but we're short on nursing. Yeah, can you even believe it?! Colby has a nurse who works the weekend evenings, Sat and Sun from 4p-12a. She needs surgery and will be out for the next 4-6 weeks. I'm not going to even attempt to get her shifts filled. We're darn lucky to have a weekend nurse, and I'm pretty sure the nursing agency will have trouble filling the shifts. Screw it. I have plans to go to a Halloween party on the 28th. One of Colby's other nurses said she would work that night so I can go out. Other than that, Colby and I will just spend some QT together. As one of my friends said upon finding out we'll have another nurse out, it's one step forward and five steps back with the nursing situation. When nurses call off it doesn't even phase me anymore. I'm actually more shocked when they all manage to show up for their shifts in a week. I have no control over it, so I better learn how to deal with it.

Colby started attending school on October 2^nd. That means we're both getting up earlier, and the nurse has to be here earlier in the mornings. We're slowly adapting to the new schedule. And I've decided to send Colby to school all 5 days a week instead of 4. I really like his teacher this year. She has already learned how to navigate his eyegaze. I think she sees potential in Colby and is also willing to push him when it comes to his extreme stubbornness. There's no way I'm taking Colby's swimming away from him, so we'll be doing that one evening after school. Hoping it doesn't wear Colby, and me, out too much. We'll see how it goes.

Spinraza injection #3 is done! Colby did as well this time as he did with the first two. One more loading dose on Nov 15^th, then he won't have another dose until 120 days, which is March 2018. Our appointment was at 6AM. Damn, that's early. I gave it some thought and decided doing an up and back trip would probably be easier than packing, loading, unpacking, unloading, repacking and reloading all of Colby's stuff. So we left at 4-freaking-AM last Thursday. Everything went smoothly. Colby and I both seemed much more at ease this time around. I don't take chances with him developing a lumbar puncture migraine, so I make him lie flat for 48 hours. He was not digging it! I could tell he was totally bored. Sorry kid, Mama's rules. It's a small price to pay to avoid complications from getting the injection.

We're getting excited for Halloween. I've been doing some decorating here and there as I've had time. I've decided my decorations are all too cutsie. Time to step it up and get some bigger, scarier stuff. Also need to decorate outside more. Okay, I don't know if I NEED to decorate more outside – I just really want to do it. If I had the time and money I'd turn this darling little bungalow into a creepy, scary, awesomely decorated house. Wonder if I could find a good price on a coffin somewhere...

So that's a little update. I'm working some extra hours this week so I figured I'd better blog while I had a little time to do so. You know, gotta make hay while the sun shines. More soon, as time and energy level allows.