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No-go on the Botox

In what was an amusingly fitting end to a really crappy week, Raya's botox procedure did not happen yesterday as planned. I had been told on Thursday evening at 4:45pm that we still did not have authorization for the botox from the insurance. I was told that we could sign a waiver saying we would pay the $1200 for the injections if the insurance company ended up denying the claim and go ahead with the procedure. I told the scheduler that we would not be willing to do that. She reminded me more than once that Raya's doctor had opened her schedule specifically for Raya and doesn't normally do procedures at the main hospital or on Fridays, (i.e. guilt tripped me) and said that since our insurance company is in a different time zone, there was a chance that we could have the authorization by the time the procedure was scheduled to start at 8:30. She said it was completely up to us what we decided to do, whether we rescheduled or went ahead with it, or just went to the hospital in the morning to see if the auth had come in yet or not. In hindsight, she should have just told me to reschedule since I said we weren't willing to sign the non coverage waiver, but she didn't. I knew the doctor had made special arrangements to do the procedure and we had already arranged for Donny to take the day off and for the 3 older kids to spend the night at friends' houses, so we figured we might as well show up.

We dragged ourselves out of bed at 5:30 and left for the hospital. I tried calling admitting on the way there to find out if they had by chance gotten the auth but the lady talked to me like I was an idiot for thinking that something might have actually happened before 7am Pacific time. Raya had been wide awake when we got there and chattering up a storm when she got into her stroller in the parking garage. As soon as we started walking toward the entrance, she laid back in the stroller and hugged her blanket and didn't make a peep. To passers by, she probably just looked like a tired kid that got dragged out of bed too early, but that wasn't it. This is what hospital anxiety looked like yesterday:
Normally, she wants out of the stroller and she fusses and whines and cries while we wait in admitting. This time, she just sat there and played quietly with the half dozen hair barrettes she had stuffed in her pocket before we left the house. Goodness knows how she would have been if we had actually done the procedure and had to go into the endoscopy suite where she had her last torturous hospital experience in May. That's why I wanted Donny to come with me this time. So yeah, girlfriend isn't a fan of the hospital.

We checked in and filled out the paperwork and they called us back to the admitting desk. The lady (who was rather crabby and snippy, I might add) started going through everything and then said something about the waiver we had agreed to sign saying that we'd pay for the injections if the insurance denied it. I put the pen down and told her that was the exact OPPOSITE of what I had told the scheduler the day before. I said that we had been told the Botox injections would cost $1200, and that it was more than we could risk being stuck with if the insurance denied it. I explained to her that the scheduler had told me that we could come down in the morning and have admitting check again to see if the insurance company had made a decision yet or not. She was not happy to hear that but finally conceded that she understood why we might not want to sign the waiver. She told us (rather rudely) to go sit in the waiting area while she called the insurance company. About 20 minutes later, she came out and listed off the 4 or 5 people she had spoken to before finally being told that it was still in review, and then told us we'd have to go home and reschedule. Have I mentioned that she was rude? I've dealt with the same lady many times before and she's never been overly friendly but she must have been having a bad day or something because she was just plain rude. Ugh. So we went home. Raya fell asleep in the car on the way home and Donny and I were both ready for naps when we got home.

I tried not to be mad because we went there knowing that it was pretty likely that the auth wouldn't be there, but it was still really frustrating. Once we got home I emailed the scheduler (because I didn't know if I'd be able to have a polite phone conversation at that point) and let her know that we would need to reschedule, that I understood rescheduling meant that we'd be having a different GI and told her which ones I would be okay with, that I was aware that her doctor had gone to some trouble to get us that appointment & I was sorry to inconvenience her but that we had also gone to a great deal of trouble to make arrangements to be there, and that I did not want anything scheduled until we had the authorization from the insurance company so that this situation did not come up again. I also emailed the doctor to let her know the whole story because I didn't know what she had been told about why we canceled at the last second. We have a good relationship with her and I want to keep it that way.

Later in the afternoon, the scheduler called me and said that the insurance company had ended up denying the botox and was requesting a peer-to-peer review, meaning that their medical director wants to talk to Raya's GI doctor about why we're trying to get approval on botox. Hopefully that conversation will take place next week and we can try and get it scheduled again with the other GI that I absolutely love.

Now that all of that has happened, I find myself wondering if the botox injections will really be worth all of this trouble. It is clear that we need to do something if she's ever going to progress past where she is right now. I liked the pyloric botox option because it's less invasive and less permanent than a surgical procedure to enlarge the opening between her stomach and intestine, but the difficulty we're having with getting insurance to approve it just one time makes me wonder how sustainable of an option it will be (if we ever get it to happen at all). Botox doesn't last forever, so she would likely need repeated injections in the future. We've also been told that it can have diminishing effects with each subsequent injection, so even if it works great once or twice, it may not work as well after that. I'm not one to rush into surgery, so I hope that we at least get one shot at the botox so we can see if relaxing that muscle will help or hurt before we end up doing something more permanent.

In other news, Raya has now branched out to "normal" popsicles, as long as they don't have any natural ingredients in them. Amusing, eh? Other moms scour the freezer section looking for popsicles without high fructose corn syrup and with only natural ingredients and I'm looking for the ones that DON'T have anything "real" in them. (it's because we're slowly adding foods back into her diet & don't want to mess it up by having her eat something we're not ready to add yet) Anyway, she LOVES popsicles! The stronger the flavor, the more she likes it. I wish popsicles weren't brightly colored though because then she ends up looking like Joker from Batman. Yesterday's popsicle was orange so it wasn't as Joker-esque as when she eats a red one.

We had a pretty quiet day for the rest of the day. It was BEAUTIFUL for being the middle of July in AZ. The temperature hovered around 100 degrees and it was overcast and breezy all day. In the middle of the afternoon, a huge dust storm blew in and although they're messy and not fun to drive in, they break up the monotony of a summer full of bright sunshine and extreme high temperatures. We finally got some rain too. It's been a slow and boring monsoon season so it was nice to finally get a good one. The friends that Cole stayed with brought him home in the morning after swimming and I picked the girls up in the afternoon. They had all stayed up later than they usually do here so they were all tired and crabby by bedtime. (that's why we don't do sleepovers unless an emergency or hospital visit is involved.)

In the evening, Donny and the big kids went to karate class and Raya and I had a nice visit from some friends. Raya hasn't had many opportunities to play with kids that are younger than she is so she had a great time with little Miss E.

She is a darling 1 year old who is working really hard (along with her awesome parents) to eat and drink enough that she won't need her NG tube anymore. I don't know how we got so lucky (or how so many people around us got so unlucky, haha) but we have so many little buddies close by us who have feeding tubes and it's so nice!

After they left, I got a phone call telling me that my car was already finished at the body shop (HOORAY!!) and we could pick it up today. While I was on the phone, Miss Mischief decided to get into the fridge, take out a 2 pound bag of shredded cheese, and dump the entire thing into a plastic Easter bucket in the corner of the living room (where all food and liquids are prohibited) behind her dollhouse. The floor was still covered in Build-A-Bear fuzz from the previous day's Tubie Friend making marathon, so I had decided to vacuum and discovered the cheese when I got to that corner of the room.

Such a stinker! The carpet is long and fluffy and the cheese had been there just long enough to start getting warm & soft, so vacuuming it up was not easy. And of course she ate some, and she's allergic to dairy. She complained later that her tummy hurt but that was probably because of the whole wheat Ritz crackers that she had gotten into the day before. She's on a food stealing kick this week. Hopefully it will end soon before she makes herself sick. After the cheese was cleaned up, I decided I'd better not let her out of my sight until she went to sleep so we played Guess Who until she was ready for bed. Have you ever played Guess Who with a 3 year old? It's comical. She chattered up a storm the whole time we were playing. One of these days, I'll get a good video of the conversations she has with us. Sure do love this little ball of energy!


  1. Ugh - Insurance. The bane of my existence. Can't live without it, can't reach through the phone and shake some sense into the people. AY! I hope they see the light - and quickly. Sometimes they are their own worst enemy - I'm assuming that Botox is cheaper than surgery (which they'd probably pay for, right?) We had issues one time with ours - they wanted a THIRD sweat test AND the $$$ extended Cystic Fibrosis test (after two negative sweats and a negative routine newborn heelstick AND genetic screen) before paying for a different genetic test. Like three negatives that pointed toward "test for this" wasn't enough, and they wound up paying for all three tests (the first two together cost more than the third) when they could have just approved and paid for one. Sometimes, I just wonder...

  2. I just found your blog via your youtube page on tuesday (they sent us a zevex from a kangaroo and I was sooo lost BTW your youtube rocked!) On to the botox we are 6 days out and she is doing amazing! She is also tolerating all feeds through her G, our funding came together rather quickly and the surgery was fast (for where we live 12 days is fast we are used to 6-9 months min. Would I do the botox again yup!


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