Insurance

I've mentioned some of the tricks we are trying at home to encourage Kyle's oral eating. Did you know there is a not-so-wide network of hospital programs that specialize in intensive food therapy? Some are hunger-based, like what we are fiddling with. Some are reward-based, like our food therapy sessions are. They have very high success rates.  One program even boasted 95% success. That looks pretty darn good.

So, why isn't Kyle in one of these programs? The short answer is insurance. Our therapists say that  they've never seen it be covered by our insurance company. The insurance's idea is that eventually the child will learn to eat, so no need to pay the ultra-expensive cost if in a few years the kid could do it on his own.

This thinking makes no sense to me. Because he has a gtube, insurance covers 100% of his formula. For the first year, we only used it as a supplement, so it wasn't very expensive. In January, we switched him to Alimentum RTF, which is a premixed formula without corn. Try finding a formula that doesn't have corn syrup in it. Seriously. It's hard. It was what helped us start having barf-free days. Our home health company delivered a month's supply with all of our other feeding supplies. They charged our insurance over $1,000 for the formula alone. You would think a company would want to invest more money upfront for these programs that have fabulous success rates and stop being on the hook for a giant wad of cash every month. Maybe they don't feel the pinch though because I started blending real food for Kyle and he hasn't had formula since June.

Jeremy and I have mulled over the idea of switching to an insurance that would cover a major portion of a program like these because it is cost-prohibitive to try to pay out of pocket. The hospitals willing to quote me a price gave me figures over $15,000. I decided that Seattle Children's was where I wanted Kyle to go. It is hunger-based, 2 weeks (some are 3 or more), and close to friends and family so I wouldn't be without a support system. We started calling to find out what it would take to get him into their program.  My grand plans were crushed because they are set up as a regional children's hospital to serve Alaska, Washington, Idaho, and Montana and won't accept children from outside that region. Nevermind that I am 20 miles over the border and live much closer than anyone in those other 3 states. Or, that yes, I have two children's hospitals within 20 miles, but neither one offers a program like this. The next closest one is in the Bay Area.

I tried to ask how long I would have to move back in with my parents in Alaska for him to qualify as being from Alaska. The therapist I talked to was interested in Kyle's case and said she would present it to the board of the program, but hasn't gotten back to us. Normally, we could wait, but Jeremy's open enrollment ended Friday. So, we are still with Kaiser. It was too great a risk to switch insurance without knowing they would accept Kyle. A switch would've meant getting an entirely new medical team, which I was okay with if there was this amazing program as a benefit, but it wasn't worth a calculated risk.

Instead, we hope to try these tube holidays and as he progresses and consumes more (hopefully), increase their frequency until we convince him that eating is delicious! And doesn't always have to include retching with it.


PS: We have fabulous insurance. It has kept us financially solvent over the last few years, and I will say this has been my first complaint.

Tube Holiday

Two weeks ago we experimented with a tube holiday for Kyle. Working with his medical team, we decided to encourage hunger by skipping his regular meals pushed through his tube. We drastically increased his time in the high chair and offered numerous options of food for him to try orally to see if we could get him to connect hunger with eating.

Sunday, November 3, we started off pretty well. He licked some drops of milk off a straw, had a sip of apple juice, put 3 cheerios in his mouth and mashed them before spitting them out and licked a tiny bit of hummus. He likes to suck off all the powdered cheese from Cheetos, so he did that too.

We took him to church and worked with him in his nursery class during snack time. Kyle's interest in food was way up. He was licking all the crackers offered and even got half a graham stick to dissolve in his mouth--here's the big step--and swallowed it! He rarely swallows anything besides water and never something that was solid.

Our next big success was at dinner. He loves the brothy part of taco soup. We made it for dinner and I blended it up to offer him. He was amazing. He fed himself some bites and when he got tired of that he actually let me feed him bites! This was the most he has ever eaten in one day. It is still a very small amount, but the progress we saw was wonderful and enough to bring tears to our family's eyes.

Even though we weren't giving him his regular meals, we did want him to stay hydrated. So we pushed about 20 fluid ounces of a pedialyte-water mix through his tube at meal times.

The next day didn't go well. He was too tired from not having any food to even try to eat. We canceled the rest of the tube holiday and started giving him small meals to perk him back up. By Tuesday, he was his regular self again.

When I showed the video to his food therapist, she was thrilled as well. We are trying it again for 48 hours starting tomorrow. But, this time, we are going to give him about 25% of his calories along with fluids and see if that will help him make it through a second day.