Also during this time I've been dealing with 3 appeals in regards to getting this surgery approved thru insurance. Time is ticking away since we have met our deductible for the year, and well it starts over June 1st. (that's coming way too fast at this point in this situation) While trying to stay updated with the medical team, I've been given 3 different stories from the different departments involved. I'll admit real quick I'm pretty tired of the mess. I wanted an update this last week so I pushed some buttons with a little necessity in my voice. I got a call that disturbed me greatly about how the implant hasn't even been ordered because there is no contract with a manufacturer. I was told that they've never done this type of surgery. I was told that another child whom needed an implant that was on state medicaid was looking for funds to have the surgery and that Koda's file was combined with that child's journey; so they were trying to find him funds. I said, whooooaaaaa! STOP! What? Koda has commercial insurance and a secondary, there is no funds to be sought. It's all a real mess! I made more calls.
Uhm, making a longer story short. The plastic surgeon just now called this evening. He started with, "I apologize for the information in which you have been given though it's the truth." He also said, "Koda is the most complicated case they've ever seen regarding the skull due to the soft bone tissue, the deteriorated design of the hole, and the location of the plexiform neurofibroma (tumor). This is a very serious surgery due to the exposure of the transverse sinus, the unknown of what's really going on until they get in there." He will not do surgery until he feels he has what he needs to do it the way he would want it done if it were his son. So, instead of going in there, then closing him back up to come tell us they have to go back in because they didn't have the proper implant. He's researching and conducting business with 3 other 3D manufactures that can give him the implant he needs, 2 of those have failed and the 3rd to report within the next couple weeks.
He said, he may still have to go back doing it the "old way" and do a manual carving while in surgery because they just don't know. There's a tentative date towards the end of April, but not holding my breath. He said the last thing I needed to worry about was funds, insurance paying/approval, and deductibles." I said, that's easy for you to say. He kinda laughed, said yeah...I don't even know what deductibles are. Nice, glad you don't have to worry about that. I love an honest doctor. Let me say, he wasn't being arrogant or anything negative.
Then get this...I'm in the middle of all this and school calls on Tuesday. If I don't bring back K's progress note by lunchtime, he's going to loose his recess. UGH...thank God, I don't work outside home, huh? This is an ongoing battle that we've got going on this year. They apparently love to take away recess, but be damn if it's because I did/didn't do something. This paper came home on Friday in his folder, I flip through the pages to see if there's any notes for me, nope. Saw the grades, but didn't pull it completely out so didn't realize there was a signature line. His grades are all good, so I had nothing to discuss except applaud him for his work. I can understand if his grades weren't up to par..., but regardless I didn't know it had to be back on Tuesday (Monday-no school). His para has been out for a little while, and getting to school has been a struggle because he says no one really helps him. Just all those seemingly little things within themselves really build up on a momma.Prayers for K please as he really is concerned about the surgery, and everyday he has to wear his helmet reminds him of it even more. Thankfully we have an oil that controls his pain and anxiety. Thank you to all of you whom have contacted me one on one to find out what's going on because I haven't blogged. I appreciate you. I also don't care to answer questions, so feel free. I'm not all overwhelmed by that. Be patient with me as I'm patiently awaiting too.
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