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Conversations that sting

Raya has become quite the conversationalist. Most of her recent conversations are one sided and probably fit more into the lecture or diatribe categories than the conversation category. It amazes me sometimes how many words she can get out in a single breath of air. Of course the facial expressions and hand gestures just put the whole thing over the top and none of us can really help but laugh when she gets like that, no matter what the subject is. She also likes to contradict everything I say. The other night she asked me if I wanted to do something and I said I would after I was done with my dinner. She said, "Um, that's not dinner, that's pizza." I said, "Kid, I'm eating pizza for dinner. The pizza is my dinner. Stop arguing with me and eat your tortilla chip and ice." ha ha. She really is a hoot.

Today I had a different conversation with her. It was probably the deepest conversation that I've ever had with her, and as deep as it can really get with a flighty 3 year old. We were making some Tubie Friends this afternoon. There were 5 of them, so each of the kids was responsible for pulling the stuffing out of a bear (or bunny or puppy) and putting it in a plastic bag and then stuffing it all back in once I finished putting the medical devices in (NG, G, and GJ tubes, nasal cannulas, and trachs). While Raya was slowly putting the stuffing back into her bear, for some reason, I decided to ask her a question. I said, "Raya, do you think someday you would like to not have a tubie in your tummy anymore?"

I don't know what possessed me to ask her. Before that moment, it had never occurred to me that she might actually want to not have a G tube someday. For all I've assumed, she views it as a part of her body, and how would it even occur to a little kid that the tube that's always been there even COULD be removed. To my shock, her face lit up, she looked down at her tube, put her hand on it and said, "You mean I could have no tubie?!" Ouch. I tried not to visibly react the way I was feeling, and said, "Well, if you eat lots of food and drink lots of water and swallow all your medicines in your mouth every day, then we could take your tube out. Do you think you would like that?" To which she replied, "And I wouldn't have a hole in my tummy anymore?" And I'm thinking to myself, Oh.My.Word, my daughter is consciously aware of the fact that there is a hole in her stomach and has positive reactions to the mention of removing the tube and not having the hole there anymore. I don't know exactly why, but that hit me hard and kind of made me feel like crap. It has never even crossed my mind that she would even have an opinion about the fact that she has a G tube. She has had it for longer than she can remember, and it's never been a choice for her, nor does it seem to bother her that she has it. I really don't think that she has the type of personality that would allow her to give a crap what anybody else thinks about the hole in her tummy, but until today I hadn't even thought about the possibility that she might ever not like that it's there.

I'm still trying to decide how I feel about that whole conversation. Of course being the funny girl that she is, after I told her what she'd have to do in order to not need the tube anymore she said something about how she was already full so she'd have to eat more on a different day. Sort of like, well yeah that's a nice idea but I don't feel like it today.

That made me laugh but kind of feel like crying a little bit too because I've seen the current limits of her stomach capacity and it's SO HARD to imagine her actually being able to eat enough to not need the tube without having about 8 meals a day and only IF her stomach would empty. She gets full fast when she eats solid food. Her lunch at therapy yesterday was a good example of that. She had about 3/4 of half of a red potato, 1 1/2 slices of a peach, and MAYBE 2 ounces of her box of Splash. It took her about 40 minutes, and she was FULL. If she had eaten another bite or had another sip of Splash, she would have been hurting. She didn't want anything but a popsicle the rest of the day. Today has been quite a different story. She's been sneaking food that she knows she's allergic to today, like Honey Nut Cheerios (allergic to oats and almonds...) and whole wheat Ritz crackers. She's been pushing the limits today but so has everybody else. They REEEEEEEALLY tried my patience today. This is the point in summer break where I start to really look forward to school starting and then feel guilty for wishing away their summer break. But yeah, we're counting down... :)

Speaking of counting down, the big EGD and botox procedure is tomorrow morning. Maybe. Gosh I love me a good insurance drama. I emailed the GI office on Tuesday to ask for verification on the prep instructions for Raya's procedure on Friday morning. Yesterday I got an email back from the scheduler with the instructions, and at the very end of the email it said, "Just to let you know, we still have not secured authorization for the Botox injections. I will keep you posted as soon as I hear from the authorization team." Um, wow, nothing like waiting until the last minute, eh? By about noon today I still hadn't heard anything so I emailed her and asked if they had heard anything yet. She replied that they hadn't but that she would let me know. Since we're down to one car and it's not big enough for all of us, I made arrangements for the other kids to go to friends' houses to spend the night. They were thrilled since we have a no sleepover rule. The only exception to the rule is for hospital stuff and emergencies, so since this fit the rule. :) I figured that even if the insurance didn't auth it in time, I would at least have one night of peace and quiet which I definitely deserved after the wild and crazy crap they pulled on me all afternoon.

At 4:45, the scheduler called me and said that Raya's secondary insurance denied the botox and the primary insurance hasn't said yes or no yet and it's waiting to be reviewed by their medical director. I wasn't sure how to respond to that. Nothing like this has ever happened. I asked her if that meant we needed to reschedule and she said, "Well, it's completely up to you. You can still go in at 6:30 and see if they've gotten the auth yet. The insurance company is in a different time zone so they might have it done by the time you get there. You can also sign a non coverage waiver saying that if the insurance denies it, you'll pay the cost of the botox out of pocket. It's $1200." Oh sure, because if we're going to pay $1200 out of pocket for BOTOX, it's going in MY FACE to fix all the lines & wrinkles I've accumulated over the past 3 1/2 years from stress over stupid insurance crap like this! When I mentioned rescheduling, she said that it's up to us and we could reschedule but that it would be with one of the other GI doctors because "Dr. S only opened up her schedule tomorrow for certain kids because she's not normally at the main hospital anymore." I'm aware of that, and I am deeply grateful that she would do that for us, but it doesn't solve the insurance issue. Since I was completely on the spot about what to do and had already made arrangements for the kids, we will go in at the time we're scheduled for but I will NOT be signing any waiver for non coverage, and if that means we have to sit in admitting until they hear back from insurance then so be it. It wasn't our screw up so if the auth doesn't come by the time the procedure is scheduled to start, then I guess we'll be rescheduling it for another day. I'm glad they're keeping me in suspense about it. It almost makes me forget about the suspense of seeing how the botox will actually affect Raya's digestion and whether it will do nothing or make her have dumping episodes or somewhere in between. ha ha.

>To end on a positive note, here's some pictures that she wanted me to take of her last night when she was being silly. I asked her who taught her to do that with her fingers and she said, "*sigh* Mommy, nobody teach-ed me, I teach-ed mySELF!"

And here's Sleeping Beauty all passed out on the living room floor tonight. She fell asleep just in time for me to not have to listen to the mariachi episode of Backyardigans again. ♥


  1. I'm sorry about the insurance issues. I've dealt with them, and they suck. Our insurance will not cover botox so we can't even experiment with it. And also, I understand the punch in the gut about her thoughts on her tubie being removed. My 2.5yo son was playing with a socket wrench, pretending to fix things. Then he put the socket over his tubie and said, "I fix-ed-ed it my bel-wie!" That made me so sad for so many reasons. I've never asked Knox if he wants his tubie removed, but my guess would be that his answer would be similar to Raya's.


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