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.