Dealing with insurance companies has probably been one of our most frustrating struggles through this whole ordeal. We were lucky that Matt landed a new job in September after his company closed down but with that it lead to a change of our insurance plan in the middle of one of Liam's hospital stays. We started out with Kaiser which was OK until we needed intervention for Liam, they are more of a wait and see organization, which don't get me wrong is a great way to look at medical problems in certain cases. By the time Liam was 5 months old I had repeatedly gone to his pediatrician saying that something was not right, he wasn't growing like he should, he was losing weight, he cried in pain all the time, he constantly vomited. It was that mom gut of something is just not right. She patiently listened and tried some different medications for Liam but nothing really worked. Right after he turned 6 months old he had another checkup and this time she was concerned because he again lost more weight. She ordered some specialized blood work and sent us the hospital that morning to have it done. As I was arriving home she called and said she had spoke with the pediatric specialist at the hospital and they want Liam to be admitted to the hospital right now. So we went from me constantly telling his pediatrician that something wasn't right to hospitalization. I was in shock and I really felt like if she had listened to me sooner we could have avoided this drastic of a measure. We were there for 6 days until October 1st when our insurance changed and out we went with a not so great plan but they were done with us we were no longer paying for their services. We got our medical records (which was more than 500 pages from Liam's birth to 6 months old) and moved on.
Moving from Kaiser to an outside HMO is like being hit by a truck. At least with Kaiser everything is internal and it is way easier to maneuver, however you have to stay within their internal circle without the ability to get second opinions. At least before we were kicked out of the hospital our GI doctor reached out to a another GI doctor, that he knew well, so he could see us within a few days of us being discharged from the hospital. We had already found a new pediatrician knowing that our insurance was changing so the hospital scheduled us an appointment with her for day after we were discharged. Talking to a new pediatrician that didn't have our medical records or know our history was exhausting. She had to put in 4 urgent referrals because at that time Liam was also seeing a neurologist, having OT and PT, and needed to see a GI doctor. Our very first bad experience with our new Cigna HMO and our pediatrician's office (which has since proven to be extremely difficult to work with) was when our GI appointment was cancelled because our new insurance did not authorize the visit. We were discharged on a Wednesday and we were suppose to see our new GI doctor on that following Friday. On Thursday I had this nagging feeling that I should call the GI office and make sure they received all of our insurance information and to verify our appointment, well it turns out they didn't and they had cancelled our appointment because they never received authorization from our insurance company to see this doctor (keep in mind this was all urgent since we left the hospital without a good plan in place). Well after I of course talked to the office manager (and frankly told her they had to see my son that day) they rescheduled my appointment for later that Friday. I have to say that this GI specialist was amazing.
I quickly learned that anything that was done- referrals, appointments made, prescriptions, insurance authorizations etc. etc. needed at least 5 follow up calls each to make sure that people were actually doing their jobs and making this happen. It is extremely frustrating and extremely time consuming which is really difficult when I'm trying to also care for Liam. After only about 6 weeks with our new GI doctor it was determined that Liam was a "medication failure" and needed surgery, which basically means no medication could manage his symptoms effectively. We were referred to a great surgeon at Miller Children's Hospital so we felt as comfortable as we could letting our 8 month old have surgery. A few days before we were going in to meet this surgeon and schedule surgery our GI doctor (himself) called and said that our insurance denied us to have surgery with this surgeon and we would have to find a new one on our own. This was on a Friday afternoon and was absolutely devastating. Knowing that me fighting the insurance over this would lead to months of appeals and phone calls and postpone much needed care for my son and being the "demanding" mother that I am I couldn't accept this and I found a new surgeon that afternoon and had an appointment scheduled for Monday afternoon. We were happy with our choice but we had to wait 4-6 weeks to get the authorization from insurance (standard time frame) then he was booked out 5-6 weeks so we were looking at 2-3 months before he would be able to have surgery. Our GI doctor was not OK with this he personally called the surgeon who then switched our surgery to urgent and we got in within the next week. Like I said our GI doctor was amazing.
From here everything went OK (minus the several long phone calls a week I made to keep everything moving along) until Matt's company decided to change insurance companies. Starting in January we had to switch from our Cigna HMO to Blue shield HMO which was equally if not more frustrating and difficult to deal with. Our primary pediatrician (who you have to go through for all referrals) only accepted blue shield under one medical group so we had to switch to that medical group within Blue Shield which was and absolute disaster for us. We could no longer see our beloved GI doctor who had cared so much for Liam, and after calling, writing letters, having our pediatrician call and explain the medical necessity of him needing to stay with this GI specialist they denied all our claims and said that because they could offer "equivalent" services we would have to change specialists. This was a huge nightmare for me as our GI doctor couldn't lean us in the direction of a good new doctor we were going in blindly and I was really disappointed. So like we have done so many times before we picked ourselves up again and researched every doctor available. Our pediatrician had to again put in referral after referral because at this point Liam was seeing 6 different specialists. Which then I had to call her office every day to make sure the referrals were done correctly and sent to my insurance. So we saw all our new specialists which took about 6-8 weeks since that was the first available appointments. I finally found a GI doctor I sort of like, we have been hospitalized, had tests, blood work, MRI's, EGD's, EEG's, a GJ placed, had lots of new medical supplies, go to OT and PT weekly, switched formula's and medications and all with me fighting our insurance company tooth and nail.
Our current battle is trying to figure out how much of our out of pocket max we have met (which I have calculated myself but I need an "official" number for insurance) which we are almost there since everything for Liam is so expensive. This has proven to be difficult since our medical group will not release to me our claims summary and explanation of benefits and right now they won't release that information to Blue shield as well which I just cannot wrap my head around so we are in an appeals process for that. For now we are just going to wait it out until we can switch to a PPO, which I know will also have its battles but at least we will be free to see the doctors I want to see that will care for my son to the best of their ability. Right now we are just a number in a giant organization that does not specialize in Liam's condition and they don't have any other insight except to just tackle each of his symptoms individually. I am so glad that I am a nurse and understand the medical community as well as I do. I feel really badly for the families who don't and don't understand how to fight the insurance companies with the appropriate terminology and how to maneuver getting what you need for your sick child. It is a specialized art form, one that I have become very good at because I like a lot of other mothers out there with sick children will not allow insurance companies to push me aside and not give me the best possible care for my child.
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