Day 230 - Ordering Medical Supplies & Cigna BayCare Contracts

Tuesday, August 17, 2021

So our heater alarm on the vent went off all night. It's a fun little musical beep compared to all the others! No one was really sure how to fix it. We tried a whole bunch of different things! One thing we tried was that the exhalation valve was blowing on the heater cooling it off (that didn't help), then tried emptying the circuit full of water (it wasn't that either), Mom had suggested changing out the wires... Maybe sometimes they just need to be serviced? The temperature was not staying up. It was day shift before the alarm stopped going off.

James had a large bowel movement at 7:30am. This seems to be pretty consistent in the mornings. I think we have figured out the correct dosage of milk of mag.

Mom spent the majority of the morning on the phone with Medicaid. It was pretty much a nightmare getting transferred to multiple people, having the website not work, having to talk technical support to fix issues, having people just decide to enter in information incorrectly (like misspelling of names, listing our phone number as the hospital number, misspelling our address, and choosing a random primary care provider). These people work from home and just aren't even trying at their job.  Hours of just trying to correct things without actually getting anything accomplished, just fixing.

Mom also spent time on the phone with BayCare pharmacy. Or shall we say arguing. We have Cigna as our primary insurance through Cobra and because of the ZIP code that we live in we are required to go through BayCare Home Health for our supplies because they have a contract with Cigna. However BayCare does not carry pediatric ventilators so therefore we need to use another DME called Brownings for anything that has to do with respiratory. We have requested a medical pediatric crib and it looks like that won't be ready for several months (we also have no idea on the cost yet). Essentially what is happening is that Cigna contacts BayCare, BayCare contacts a 3rd party has to negotiate rates and look for what they're willing to cover for their portion. There are too many cooks in the kitchen this whole process takes extremely long. Our discharge coordinator has been super helpful as well as our case manager at Cigna. But honestly overall we feel that if we just made Medicaid our primary insurance all of this would have been super simple with no out of pocket expenses. So I have we not made Medicaid our primary? Because we are not positive we will get to keep Medicaid once we are discharged on Tuesday. Please pray for us. 🙏🏻❤️🙏🏻

In the afternoon our feeding pump was delivered by BayCare along with a box of our G-tube feeding supplies. We are getting the orange infinity pump. It is super simple and easy to use. It is highly recommended over the kangaroo pump. Mom and Dad will be using this pump during their room in this weekend.

Dad came in the evening to relieve Mom so she could go home to shower, and more importantly start figuring out where supplies are going to go. Dad took care of a wipe down bath along with trach care. Mom needs to empty out a closet. Have you ever been able to do that? We need the room for all the medical supplies to be organized. Yes, our living room will look like an ICU. The first priority is the health and safety of James, second is aesthetics. Although with Juju and Aunt Robin coming to help I'm sure it will look nice. We can't wait to have our favorite BayCare staff members over once we are settled in!

We have some super busy days ahead of us as we continue down this road of getting discharged!

On another note we are going to try to wean James's PEEP to 10 on Friday. He is doing really well respiratory wise. We just need to tackle the GI part!

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭