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.