Sunday, September 27, 2009

Doing HBOT at Miracle Mountain

We made it to Miracle Mountain. We had a good trip with Brayden sleeping most of the way here. He was entertained watching his Nick Jr. cartoons when he wasn't sleeping. Sure beats the days of when he wouldn't even ride in a carseat without trying to stand on his head. We are doing another 40 sessions of HBOT here at Miracle Mountain. Other than being worn out from packing the whole, driving here, unpacking the house and then going to walmart for groceries, we are doing good. The weather is much cooler here though, we had to wear our jackets tonight. Brayden has been in a good mood all day and didn't even fuss while we were at Walmart. I will update with some pics as soon as I find where I put the camera. We hope everything goes well on this trip. We hope the 3 weeks and 2 days we are here flys by. Hopefully Evan and Kaitlyn will get to come visit us.

Friday, September 18, 2009

Totally Fed Up

Brayden's nursing hours have been decreased again despite my appeal to keep his hours at what his pediatrician has ordered 56 hours per week. I don't know where these people get their information on how to determine hours of care needed for children but they are totally wrong! How can they determine that he doesn't need nursing care when they have never seen him or evaluated him. They are stating that since his condition is stable they can decrease his nursing care hours. Anyone who has spent 30 minutes with Brayden knows he needs nursing care because caring for him is mentally and physically exhausting not to mention his rigorous care schedule. Brayden has to be monitored 24 hrs a day, how do they expect the parent to be alert 24 hrs a day to properly care for their disabled child? I have no family here to help out with Brayden and my husband has to work because I cannot. So all of Brayden's care is left up to me. He even has to be monitored at night because of his sleep apnea and he likes pulling his oxygen off. There is no one else who can provide the care he needs due to his g-tube feedings and oxygen use so he can't go to a daycare or babysitter. So thankful I don't have to work because I have no idea how he would be cared for with only 24 hrs of nursing care allowed per week. I guess that I had better get use to not sleeping. Praying that I can remain alert enough to properly care for him. Our health care of people with disabilities in this country is a joke. Ha!Ha!

Friday, September 11, 2009


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 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 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.

Sunday, September 6, 2009

Guess What............Sick again!

Brayden has been sick with strep this week, coughing, congestion, and fever . Evan has also been sick with strep and flu symptoms. I have also been sick with congestion and flu symptoms. I swear we have the swine flu, but the doctors didn't even check for the flu. Hopefully Kaitlyn doesn't get sick. Not much else going on here except for us trying to get well. Hope everyone has a Happy and Safe Labor Day!