So I didn’t really plan on telling everyone this, but Ben has lost his job. Such a shock after 28 years with the same company. They wouldn’t even tell him why.

I’m not worried because he’s really good at computer programming and I know he will get another. However, this comes at a rough time since his insurance will end on Oct. 31 and Belinda’s surgery is Nov. 5. We have information for COBRA insurance, to continue the current coverage, but that will be around $1800 a month for our family. That is quite a bit higher than we can feasibly pay at this time.

We need to find out how much COBRA would be just for Belinda, and then seek out an alternate short-time insurance option for the rest of us. I believe Belinda needs to stay on the insurance because of the copay and out-of-pocket max already having been met. I don’t know how much the surgery costs would be to us if we started over with temporary insurance, but I imagine it will be more than just insurance her through COBRA. It is frustrating that we did meet those costs, and I was looking forward to taking care of more medical things in the next two months, and now that’s in jeopardy.

I also contacted the National Organization for Rare Diseases to see if there is any assistance they can offer, but I just emailed them so nothing yet.

Bennett is looking into the insurance offered at his job to see if doing his separately through his work would be a less expensive option. Lenora will not want to get on Ben R’s (her husband) insurance because she already checked and the SSM Health network is not on it, which would mean she’d have to leave our beloved doctor and all her other doctors (gyn, therapist, etc) which she doesn’t want to do. That’s why we left her on ours when she married, because she can still stay on it for another year or so. I just feel like I can’t do that to her when she has made such good relationships with these doctors. When aetna and SSM Health started not playing nice a few years ago, all of us either cancelled appointments or paid out of pocket for two months, to stay with our providers until we could switch health care plans.

I also looked into SoonerCare, since without Ben’s job, we would definitely qualify to get it for Belinda, but their website says they prefer people stay in the state for healthcare needs. I think we might have a fight on our hands if we try to explain that Belinda needs to go out of state because she needs a pediatric surgeon to treat her rare disease, and not just an ENT.

However, our current insurance also prefers in state, but somehow the DC doctor’s office was able to prove that she needed to travel for the POEM procedure, so maybe that would work? The issue is, there are no pediatricians able to perform the POEM procedure in Oklahoma, but I think there are pediatric ENTs who can do the dilation. But have they done the dilation on a patient who has previously had a POEM? The DC doctors know how to keep the scar tissue to a minimum, since this affects her every day and will continue for the rest of her life. It’s important that the doctors do everything they can to ensure her esophagus is in the best condition it can be.

I have not talked about this publicly before because I don’t even want to consider it, but everything must be done to prevent end-stage achalasia. From the National Institute of Health: end-stage achalasia (ESA) is characterised by failed myotomy, massively dilated and tortuous oesophagus with nutritional deterioration due to progressive dysphagia and vomiting. In these subgroups of patients, oesophagectomy may be the last resort.

I am trusting God but just reading that description brings tears to my eyes and makes my stomach drop.

Please pray, I don’t know what to do.