Brayden is sick again, it never seems to end. Coughing and congestion and of course his storming episodes. He always seems to have the storming episodes when his body is under stress. It wears you out just trying to hold him because he is constantly stiff and rigid and trying to stand on his head. He has been very fussy and just wants to be held. Thank god for the nurses right now. But, like everything else that is good that will soon be cut back on by medicaid. We will only be getting 24 hrs per week of nursing care after we come back from North Carolina in October. They state because his condition is stable with no recent hospitalizations that they can cut back on his hours. We are going from 56 hrs per week to 24. Despite the fact that there is no respite care or medical daycares available for him to attend.So much for Obama's year of community living. This is not just with Brayden; state wide in GA skilled nursing services in the home are being cut for children who participate in the GAPP program. The Georgia health partnership determines the level of care even though they have never seen the child or assessed them. They ignore Doctors orders for nursing care and they give you what they think is best. They are probably some pencil pusher who has never even seen a sick or medically fragile child. I am just fed up with the whole healthcare system period! It makes no sense to me. Who comes up with these ridiculous standards of care? Some moron who has no idea whatsoever about the level of care and therapies required for these children! This is not just for Brayden, as a pediatric home care nurse for years, I have seen how horrible the system is. My sympathies to any families having to deal with a child or loved one and this horrible system we call healthcare. Here is one example of how ridiculous the system is....Brayden has sleep apnea and wears oxygen at night, he has to wear an oxygen monitor because his oxygen saturation levels drop frequently due to his sleep anpea. Medicaid pays for his machine that monitors the oxygen saturation levels but, not for the sensors he has to wear in order for the machine to work. I think that if a qualified doctor orders something for you that you should be able to get what they have ordered, not have some dimwit tell you that it is not covered especially when it is medically necessary. We desperately need some kind of healthcare reform. Ok, I am stepping down off my soapbox now.
On a good note, Brayden will be starting a special needs preschool when he turns 3. We have a meeting today with the school to go over everything. Now we just have to figure out what to do about his wheelchair because he hates it and will not sit in it. We recently got the stealth i2i headrest put on it because his head was so floppy with the other one and he kept getting his head stuck under the headrest. He absolutely hates his wheelchair. So if anyone has any ideas, he has a zippie iris tilt in space wheelchair. I will try to update soon.
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