Frustration

Why do I have to fight for everything Brayden needs? I have appealed Braydens nursing care hours being reduced and they sent a letter that had to be received back by a certain date. I sent them the required information and had it next day mailed with signature required. Now they are saying that they never received my additional information. I received a letter from them yesterday Sept. 9, stating that if I wanted to file for a hearing I could keep my nursing hours the same until the hearing was heard but I had to have a letter sent to them stating this before the effective date of when his hours were going to change. Well, his hours were due to be changed effective Sept. 4th. So how can I send a letter for this when I dont receive their letter until 5 days after when the hours are supposed to change. This is just how the medicaid system works. They try to get out of providing services because of techincal stuff like this. I am seriously fed up with the medicaid system!
I would like to go leave a bunch of kids with serious brain injuries in their office for a week and see how well they deal with everything....lol. I have contacted USPS and they are sending me conformation of where the information I sent was received and signed for by someone at their office. Imagine that......it was received and signed for by their office on the day it was supposed to be there.

Brayden has also been out of his prevacid all week because it has to be prior approved because it is not on their list of appproved medications. He has been on this medicaiton for over a year, why do I have to get this prior approved every six months? It takes 1-2 weeks to get it approved. His medical condition has not changed any and he will be on this for a long time. Why waste everyones time by doing this?

Things that really get me are the Georgia Pediatric Program, which provides skilled nursing care in the home. It states that there is no evidence that the current nursing hours are medically necessary to correct or ameliorate the child's medical condition. I am not aware of anything that will correct an anoxic injury to the brain. So I hope they are not expecting skilled nursing care to fix his brain injury. They state that since he has had no hospitalizations that his condition is stable and therfore nursing hours can be reduced. Just because he hasn't been hospitalized doesn't mean that he is medically any better. What about the 50 + times we went to the doctors office? The doctors try to keep him away from being hospitalized because we can do almost everything at home that they do at the hospital. They also state that their program is a weaning program and not for permanant placement. Where is the program for children who will need nursing care for the rest of their lives? Children who have permanant injuries that cannot be corrected. Where is that program???? It does not exist! So every 3 months you have to go through this!!! This is so insane.

Not to mention to add to my frustration, it took me 30 minutes to get an appointment with the rehab doctors at the Rehab Clinic at CHOA Scottish Rite. I got transferred 5 or 6 times, hung up on twice, transferred to the outpatient therapy, and finally put on hold for eternity. And you may as well forget ever getting in touch with one of the doctors there because no one ever calls you back!

On a good note Braydens chest xray was good. He still is feeling bad with horribe congestion and coughing. I dont know how someone so small can have so many secretions, and so much stuff to cough up.

He has been doing well with PT and he is worn out from Mrs Barbara working him today. We are looking at getting a new seat for Brayden. The feeder seat we have for him now is beginning to get small. So I think a new seat will be a good Christmas present. Just wish they weren't so exspensive. We also are going to be getting a new stroller because he hates his wheelchair but will ride in his stroller without any problems. So if anyone has any suggestions on a good stroller for bigger kids, please let me know.

Hope everyone has a good weekend.