DANTE MISSED A LEVEL

This is an “I really hate SMA and this is just a few of the reasons why” sort of blog. I need to vent. I'm stressed and frustrated. One thing about SMA that stresses the freaking crap out of me is trying to get the supplies and equipment Colby needs. I don't know if anyone else gets impatient, flips his/her lid and dreads dealing with insurance, Medicaid and the various companies that deliver the equipment and supplies, but I sure do. I've dealt with it for so long, I've learned how big of a runaround hassle it can become. Especially after the Apria Fiasco of 2015-2016. Asshats. Anyways, things have gotten weird and hectic around here with some very much-needed stuff for Colby. I'm about to have a major mama meltdown. I just don't understand WHY it is so hard for us to get the stuff Colby needs to, you know, live! And I know we're not alone in this supplies/equipment 10th CIRCLE OF HELL. I was talking with an SMA mom the other day. She said of the respiratory supplies she ordered, 50% were correct. That's a horrible percentage! However, she said on the plus side the company accidentally sent 80 pulse/ox probes. Ha! My guess is they were supposed to receive 4-8. I can guarantee they were NOT to get 80. Shaking my head and laughing out loud.

Here are some of the items I'm currently working on for Colby:

Briefs and chux pads. Now, this has been on ongoing battle for months now. And honestly, I don't know why. There are many other SMA families in Kentucky who get these supplies for their kiddo, no problem whatsoever. But for us it's a total clustermess. One issue is the nursing agency we use is “private duty” and not “home health.” Home health companies handle various supplies for their patients. Private duty nursing agencies do not deal with supplies, so we have to find another vendor to get Colby's butt covers and underpads. There seems to be a major disagreement on who is going to pay for these items. Imagine that! Colby has private insurance and Kentucky Medicaid, so what in the world could the problem be?! I really don't know. All I know is we're not getting briefs for Colby right now. The nurse coordinator at the nursing agency is helping navigate this problem. We're working together to find a company that takes Colby's insurance and also has a contract with Kentucky Medicaid.

Backup vent, pulse/ox and pulse/ox probes. Oh, this one is the biggie! I got a call from Colby's DME (durable medical equipment) company a few weeks ago. Colby's insurance just poof, up and said it wouldn't pay for these items. Ummmm, excuse me, are---you---freaking---kidding---me?! Colby has required a pulse/ox machine since he was first diagnosed at 4 months of age. Oh yeah, after almost 14 years, it's ok, he doesn't need it anymore. Idiots. And they don't want to approve for a backup vent? Colby's vent just happens to be the machine that keeps Colby, you know, breathing and ALIVE. I couldn't believe it when the DME company told me they were having these problems. Then we had Colby's pulmonologist write a letter stating the importance of a vent AND the importance of having a backup. And those fools at insurance DENIED Colby's backup vent again. Now we've taken the next step and have sent Colby's plan of care from the nursing agency, along with nursing notes. Anyone with any size of a brain could take one glance at Colby's diagnosis and/or supporting information and realize the importance of a backup vent, for shit's sake. What are we supposed to do if Colby's primary vent stops working? Just let him die? Bag him with an ambu bag until we could get to a hospital with a vent? The whole thing is so stupid. I don't even know if it's legal to refuse a backup vent to a trach and vent dependent patient. It certainly isn't ethical, that's for sure. So I continue to stay in touch with the DME to see what the latest is on this situation. As I've mentioned before, these are pieces of life-saving equipment that Colby has had his entire life. Now some schmuck dumbass just up and says nah, he doesn't need them. Makes my blood boil.

OT assessment. We need help making sure Colby has the latest and greatest switch. Colby has lost a lot of movement and strength in his wrist and fingers over the years. He has to use a switch that is very sensitive and easy to manipulate. And it seems we always needs help in getting the placement for switches just so. You have to position the switch perfectly or Colby's finger/thumb will get stuck, slide off, etc. I want an occupational therapy assessment so someone can evaluate Colby, and we can discuss future switch options and mounts/placement options for when Colby drives his chair, uses the switches for environmental control, etc. Playing phone tag with the OT. I called her, left a voice mail. She called me, left a voice mail saying she was going out of town on vacation. Of course! Most of Louisville has been on vacation in the last two weeks. She was supposed to call when last week when she got back into town, which she didn't do. Call OT and make assessment appointment also on the to-do list.

Alternating pressure mattress. Colby has a fabulous, really cool, thin cover that goes on top of his mattress. It has tubes that hook into a pump. Then the pump moves air alternately through the cover to help prevent pressure sores while Colby is in bed. We've had it for 3-4 years. It stopped working about two weeks ago. Called the pediatrician's office. Hey, we need a new alternating pressure mattress for Colby. No problem, they said. Just have the DME send us the form and we'll fill it out. Easy enough I think. Call the DME company. Hey, I need a form to get Colby a new alternating pressure cover, his broke. Oh, we don't have those forms. We need an LMN (letter of medical necessity) from the pediatrician. Well slap my ass and call me Edna, which is it?! Do you need a form, a letter, both, neither? So I need to do some followup and figure out what the status is of getting this item for Colby.

Feeding supplies. We get Colby's feeding supplies through Byram Healthcare. Colby's pediatrician's office calls and says yeah, we have this packet from Byram. It's marked URGENT and they want all this information on Colby's feedings. Then the nurse starts asking me all the questions over the phone! The packet should have been sent to either Colby's nutritionist here in town or Cincinnati Childrens where another nutritionist sort of oversees his diet, calorie intake, etc. I said just send me the packet. I'll figure out who can fill it out the best and get it back to Byram. Yeah well, those papers are setting here somewhere in this mountain of mail.

This blog entry is getting rather lengthy. Let's just say I also need to follow up on why Colby's pulmonologist hasn't sent the prior authorization for one of kid's prescriptions. And I need to follow up with National Seating and Mobility because we are waiting on parts to fix Colby's wheelchair. The power box to his wheelchair is literally being held together with duct tape right now. AND Wednesday is Colby's first day of high school! Oh my gosh! He has a new teacher. One of the nurses that has worked here all summer will be the nurse who is going to school with Colby. But she's never done the school thing before, so that's new. And I hear we have a new AM and a new PM bus driver for Colby. So much newness! I don't like it! So of course I'll be following the bus and going to school with Colby and the nurse to help her get comfortable doing the school thing.

I know I'm being a whiny butt. Just suck it up, buttercup, and do what needs to be done to get Colby the things that he needs! I know, I know. But I could cry. I could just find a dark corner, curl up in a ball, start sucking my thumb and rocking back and forth, and cry. Okay, maybe it's not that bad. But trust me, I'm mega-stressed about trying to get this stuff done for Colby. But I shall do what needs to be done, and will call whomever needs to be called. I, I will survive. Maybe. Hoping, praying, that just one of these issues is resolved by the end of the week. That would give me a sense of accomplishment. It's wishful thinking, I know. Thank you for listening to me vent. Some days you're the pigeon, some days you're the statue. Just sayin'