In With Evaluation, Out With Insurance

Today I called the clinic where we are supposed to be going, to check on the status of our insurance authorization. I am so glad that I did! I was told that our insurance company currently refuses to review the cases. They will send the case back to the clinic saying that outpatient therapies do not need preauthorization. The therapies the kids receive while there are not outpatient, and are highly specialized and intense. Some kids are inpatient, and some are day patient, so they do not show up once a week for an hour session, but instead receive many sessions every day. I knew this would be a big fight, but I had no idea how big. I was told that there are a lot of kids with our insurance who could've been seen and treated by now, but they are still waiting for this company to review their case. This has been going on for 2-3 years, and there is no agreement in the works at all. I cannot wait to get treatment for Ben, we need it now. So, I have begun to brainstorm.

One option I came up with is to change insurance companies, and fortunately, it is open season. We have been with our current company for 6 years, so changing that is a bit unnerving to me. One other problem is that the new company that may cover this stay is an HMO. I don't like HMOs. Having grown up in medicine, I can manage our care very well on my own, and I like to have control in my choices of specialists. I feel like I am losing some of that control, and that using an HMO is a serious step down from what I'm used to. My consolation is that I can go back to our current company in another year. I just have to get Ben's stay covered and completed, then hope we all stay healthy.

I have been deeply concerned about this battle with the insurance company, enough to ask for the faith of our family, church family, and friends. On Sunday we held a fast for Benjamin and this whole process. I am very grateful for the help of those who prayed and fasted for us. I truly felt their love, and received comfort because of their efforts. I know that somehow the Lord will work this out if I do my part.

We got in!

Today was Ben's evaluation at the intensive feeding clinic. I have been praying that he would be considered for the inpatient program. I think that is the only way to make any improvements, or advancements. We met with two gastroenterologists, an OT, a nutritionist, behavioral psychology, and a pediatric nurse practitioner. It was quite the team. They reviewed his history, what happened in the last clinic, how meals go for him now, his behavior during meals, and what he currently eats. They asked me to feed him, and were amazed by the array of foods I brought for him. I told them I did not travel all the way here to be unprepared. Some of the things I brought were a cheese stick, animal crackers, an apple, and applesauce. I also had pureed strawberries, yogurt, macaroni noodles, and raisins, but I did not use those. I cut the apple and cheese stick into a few larger sizes, and some teeny tiny pieces. I knew he would not tackle a normal size chunk of food, but I needed to atleast show them that. He ate the tiny pieces of cheese stick, and I mean tiny as in smaller than a pencil eraser. He refused the apple pieces until one of the specialists worked with him, and got him to take a bite. The applesauce brought about lovely behaviors. While applesauce is a puree of sorts, I still have to puree it for him, as the texture is too coarse for his sensitive palate. When he saw that we wanted him to take a bite, he opened the door and ran down the hall as fast as he could. One of them went after him and brought him back. He sat on my lap, and after much discussion took a bite from the spoon I held. He gave a good gag, and hopped off my lap and declared that he was done with the applesauce. The specialists wanted to see him feed himself, so they asked him to feed himself a bite. He grabbed the door, threw it open, and ran swiftly down the hall again. They corraled him, and he refused. One of the ladies suggested he could feed himself one bite, or I would give him two. He pondered his options, and picked up the spoon, and took a quick bite, grimaced, and exited as quickly as he could. I think that little demonstration proved the depth of his problems.

My next problem or hurdle will be to see that the insurance will cover a hospitalization. I know they are not going to want to do that. They will want to put him into the day program, which is good, except the billing is itemized, and my insurance will not cover the behavioral psychology. We do not have good mental health benefits. The hospital agrees that his nutritional status will require nurse supervision since he does not have a feeding tube, and he vomits so frequently. They are also concerned with a balanced diet, since he cannot take formula. There are a few formulas that he is able to have, but they are elemental formulas, and are usually unpalatable, even to normal, healthy eaters. Ben will not drink them, and previously had them pumped in via g-tube. Sadly, and regrettably, he does not have his g-tube anymore.

So, I go back to bended knee to request more help in this situation. I definately need another miracle to get insurance to cover this next feeding adventure. If he does not get that, I don't know how we will ever get him to do anything more than purees. Keep Ben in your prayers!

Update!

I frequently think about updating Ben's blog, but somehow never find the time to do this. I must be a busy mother of 5. Ben has come a long way since I started this blog. He is enjoying his 3rd year of preschool, and can't wait for kindergarten next year. His twin goes to half-day K, so Ben is eagerly anticipating the amazing day when he can go too...so am I. Ben decided it would be a good thing to be potty-trained about a month ago. I was elated when I realized my diaper buying days were finally over. It had been about 14 1/2 years of that, so I am happy to graduate, and so is my pocketbook. Ben is making good strides in school this year and his teacher can tell a difference between what he is doing now versus last year. He is learning his letters and their sounds. He will start soccer soon.

Ben continues to struggle with his eating. There is nothing about eating that comes naturally to him. I gave him his food this morning at 6:30am, and he is still sitting there at 10:30. If I don't coach him every step of the way, or just feed him, this is the result. He has no hunger or thirst, and the daily routine of eating does not seem to register. He is still eating watery, smooth purees, and can't seem to advance beyond that. Sometimes I get so frustrated by the lack of progression. I wish there was a switch I could just turn on.

Because of the lack of progress, and Ben's resistance to eating, we have decided to try another intensive feeding clinic. We will not be going to the same one, and this one will be more inpatient. I will take him for an evaluation by their team of specialists in a couple months, and then go on the waiting list for probably another 6-7 months for the program. It sounds so far away, but the fact that there may be help on the horizon is somehow invigorating.

I will update this blog when I return from the evaluation. Till then, I will hope for better eating days.