Well, today was productive, this morning we had the Swallow study specialist, Judy, the nutritionist, Kim, the OT Jeanine, Pam our coordinatior, and myself here for Lucas's visit. We've collectively decided that Lucas isn't eating food by mouth not only because he cant swallow, but because he has decided its not safe. Since he is constantly choking I tend to agree with him, who would think an 11 month old can make decisions like this themselves, but apparently they do! They also want to have a video camera placed in his room to record his choking in the morning since that is the worst time for him since he started sleeping through the night, he chokes and most times vomits every morning. It was also a collective decision that he NEEDS something to elevate him while he is sleeping and straps him in so that he dosen't wrap his feeding tube around himself. All in all, it was a productive visit. After that I was able to get some laundry done (shocking as it may be!) and also was able to convince the HHC that Lucas needs a smaller bag for his feeding tube, since he will be having the feeding tube longer than I had hoped, I want it to be more to his size incase he starts crawling or even walking prior to getting off the pump.
It was after all this that I hit a roadblock, my appeal for the RESQ wedge for Lucas was denied. Even after having the medical director talk to his GI Dr they still don't feel its medically necessary. I used to work for an insurance company, and I understand the bottom line, and wanting to save a buck, but how its it possible that a child needing a wedge due to his severe acid reflux and constant asperating, and needing it to have a strapping system so that he dosen't strangle himself with his g tube, or pull it out not medically necessary, I just don't get it.... I understand I don't have any fancy initials at the end of my name, but common sense would say this is necessary, its not like I was asking for the $11,000.00 bed I really want him to have so we never have to worry about DME for his bed again, I was only asking for a $500.00 wedge! And now, I can't get anyone in the appeals department to answer there phones so I can appeal the denial of my appeal, and to see if since the man with the fancy MD at the end of his name feels this isn't needed, what exactly does he expect me to do with Lucas to sleep? I mean if they are going to deny this, they should atleast inform me what they feel I should do! Now I have to figure out how I'm going create something for him to sleep in. He has almost tipped his bouncy seat twice today since he can now sit himself up and touch the floor.
On a happier note, Dylan was a super doper good boy during the home visit today, he sat on the couch and played his Leapster handheld while watching Cars on TV.. I was SOOOOO proud of him.. He is turning in to such a well behaved little man. And Lucas has decided that my leg makes a very nice chew toy.
I'll write more tomorrow after Lucas's eye appointment, he still has his lazy eye and is now constantly crosseyed... (Hi Bumpa!!!!!!!)
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