Day 218 - Insurance Hell & 8 hr LTV trials

Thursday, August 5th, 2021

Weight: 7020 grams ⬇️ (15lb 7oz)

Forgot to update that James got his 3rd Synagis shot yesterday for RSV. Cigna sent us a letter in the mail letting us know that they are not covering these shots.  These are a little over $3,200 a shot. Yeahhh.... The approval process is tied to the dates of RSV season. An insurance company will not agree to the injections before RSV season officially begins in a location—or after the season ends. For this year RSV season was pushed back because I didn't happen in the winter months the basically happened in the summertime. This is due to everyone wearing a mask and quarantining and then everyone not. Infants and older adults at greatest risk of severe RSV can develop pneumonia or bronchiolitis or experience a worsening of their existing heart and lung conditions and may require hospitalization. So it's important James gets the shot!

Mom spoke to James' Cigna Case Manager who updated her on all the stuff she is trying to work on for us...

Getting a medical crib approved has been the worst so far. So we have Cigna (via Cobra 😑🔫) AND because we lived in a particular county we are required to go through Baycare for any medical equipment. Well Baycare (yes it's also the Hospital we're at) is a nightmare to deal with to get anything approved. We found out that even if we do get it approved that it's only going to be partially covered, so we're talking thousands of dollars. Cigna has a letter of medical necessity written by our Discharge Coordinator explaining that he is ventilator dependent, he has a trach, and that in order to do something as little as changing his diaper we need to be able to put the sides of the crib down (let alone for trach care). They don't make cribs like that anymore. Having the ability for the mattress to rise aids in reflux and vomiting, as well as draining water out of his trach and circuit tubing. Most ventilator dependent babies need to sit up at an incline due to rain out. What is crazy is that if we didn't have primary insurance with Cigna and made Medicaid our primary insurance, then Medicaid would cover the full cost. However since Cigna says they do have a benefit for this we have to go through them. It would have been nice of them to simply just deny it outright so we could go to Medicaid but they won't. 

So you may be asking why are we keeping Cigna as our primary insurance? It's because once we are discharged we don't know for sure if we will be able to keep Medicaid. 😱 Again if they base it off of income as a couple we need to make less than $32K. If they base it off with disability (which they should), then we will be approved. Mom has asked around to everyone, between BayCare employees, our discharge coordinators and social workers in both the NICU and PICU, moms in Facebook groups, former families that were discharged from here, random insurance case managers, and no one really knows for sure the answer to whether or not we'll be approved for Medicaid. She has heard that it can even depend on who you talk to from Medicaid and whether or not they're having a good day. 🤯 WTF.

Updates today:

• He tolerated LTV 8 hours twice yesterday
• No vomiting in 24 hours (since 8/3)
• One small stool after a glycerine suppository yesterday.
• 12 lead EKG without abnormality
• WAT score 1 - 2.
• Fluid balance +362mL
• Tmax 36.6

Current GI schedule/meds: Bolus feeds 120ml over 45mins: expressed breast milk fortified to 22 Cal with Similac at 12pm and 4pm, and continuous feeds EBM fortified to 22 Cal 35ml/hr 6pm- 9am. GI prophylaxis started with Prevacid 6 mg q24h. He is also currently getting Milk of Magnesia 5ml 7.5 mL daily (since 8/1), erythromycin 30mg q8h (increased 7/30), and Mylicon 40 mg q6h.

We possibly maybe talking about getting a GJ...

A gastrostomy-jejunostomy tube -- commonly abbreviated as "G-J tube" -- is placed into your child's stomach and small intestine. The “G” portion of this tube is used to vent your child's stomach for air or drainage, and / or drainage, as well as give your child an alternate way for feeding.

Mom is currently a deep diving into GJs. Once she understands enough to explain what this is in its entirety and if this is something we are definitely moving forward with we will explain more at a later date.

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. ❤️