"The difference between life and death...
Is taking an active, aggressive approach to your health care. Be an empowered patient."
3 Easy Steps to Manage Your Hospital Stay
Fortunately, During our Greenville Children’s Hospital stay last year we were flooded with concerned friends and family that were concerend about Neely and offered to do any and everything to help us. From candy to meals, and research to hospital connections, anytime we were need, there was someone there to help. We couldn’t have made it without them.
The difficult part is showing everyone how much you apprecaite their support and keeping everyone updated on progress while you are so focused on the next procedure, medecine, therapy, or medical challenge that lies ahead.
This may not be the best way – This is the path we chose in 3 easy steps. (more…)
Christie Pediatric Group Never Apologized
So many of you have asked me about Christie Pediatric Group’s (our former pediatrician) response since Neely’s illness that I thought I should share my answer via this blog.
They never apologized. (more…)
Just a Mom Wanting to be Heard
It’s why I built this site…
Neely’s recovery from ADEM (Acute Disseminating Encephalomyelitis) is just part of the story I hope to share with this web-site.
Neely’s condition and recovery have inspired many families over this year to share their stories with us. We’ve heard stories of amazing recoveries, rare conditions, frustrations with doctors (primarily pediatricians), and health care bureaucracy. While there are wonderful hospitals (like Greenville Children’s Hospital) and amazing doctors (like Dr. Augusto Morales) that are truly focused on patient needs and healing; there are still far to many opportunities for patients to fall through the cracks. (Read about our journey)
(more…)
Back the the Emergency Room with Neely
On Saturday, We were out for a typical day of shopping and errands in Greenville. Neely had been laughing and playing with Ava as normal. We were in the store looking around when all of sudden she wouldn’t respond to a question that I asked. One quick look at her face and I new we were in trouble.
Neely’s eyes were dilated and jerking, her face was expressionless and her shoulders and she lost movement of her arms and torso. She only muttered a few words….”its dark” (her vision was gone) and “hold me.” Jamie and I ran for the car as I dialed 911 and they instructed us to go to St. Frances Hospital (Pelham Rd) emergency room so that they could stop the seizing.
We were there for about 90 minutes, had a CT scan and blood work and were then transported to GVL Children’s Hospital where Neely’s team of physicians were waiting for us. Throughout the night the seizure activity subsided but Neely was very weak and tired.
Neely Update-Continuous
Christy just sent a message that she is having an EEG now followed by an MRI. Please pray that these tests go well.
* 9:46am: Doctors have noticed light seizure activity from the EEG test. They are going to medicate for that. She is going in for the MRI at 10:30am today.
* 2:30pm: No new news. No results from MRI yet. Neely is resting.
* 3:37pm: The doctors have decided to move Neely to ICU to monitor her seizure medication more closely.
Apparently this virus is wreaking havoc on her nervous system. But we know that her body may be little but it is tough. She is definitely a fighter! She got a double dose of that from her mom and dad!