Sweet Ember NEEDS Your Prayer & Help

Ember will be 3 years old on the 18th of January. She has a genetic Seizure Disorder

(SCN1A) and is the first and only carrier on both sides of the family. She started having seizures

at 4 months old and all of the seizures are febrile, but are usually the first sign of illness.

Sometimes we go months in between seizures and sometimes minutes. On December 31, 2023

she had what we thought was an ordinary seizure. It started febrile and we tried to cool her off

for 15 minutes. After 15 minutes we gave her rescue medicine which was a higher dose than we

had ever given before. We called for an ambulance before giving her the rescue medicine.

When the ambulance got to the house, she had very shallow breaths. She was immediately

placed on the ventilator and we knew she would have to be transported to another hospital.

Roanoke’s pediatric center was full, but UVA accepted us immediately. The plan was to fly her

out as soon as possible, but it was extremely foggy and unsafe conditions for flying. After calling

multiple transport companies, 12 hours later, a transport finally showed up. The transport was

not equipped to handle pediatric patients let alone one on a ventilator. The transport only had

one person to be in the ambulance with Ember and one to drive. Luckily Ember’s great

grandmother had plenty of nursing experience, so she stepped up and helped out for a three

hour ride with a leaking ventilator. The ambulance transport employees said they would have

never made it 3 hours without Ember’s “GiGi” helping out.

Staff at UVA immediately started working on her when she arrived and replaced the

ventilator where it was leaking. They had everyone step out in the hallway so they could x-ray

Ember and make sure the new ventilator was where it needed to be. As we were all outside,

she started to code and they got her heart back for a few minutes after doing CPR, but she

immediately coded again. Thanks to the amazing staff in the PICU at UVA, they got her levels

right under control and never left her side for almost 24 hours. They were with her constantly

trying to figure out what could have caused her heart rate to drop and her to code. They never

found a definite answer other than she has a common cold infection. They think maybe they

may have stressed the vagus nerve or possibly she was having a seizure underneath all the

paralytics she was placed on. Her seizure medication was basically not in her system when they

checked her bloodwork. Her neurologist immediately upped the medicine and made sure she

was in a therapeutic range now. She started doing really well coming down on the ventilator and

losing all the extra fluids. She coded for a third time and it was caused by a mucus plug. Once

again, the doctors and nurses were all right by her side immediately. Her body has been fighting

against getting the fluids off of her body. Once she gets the fluids out, they believe they’ll be

able to start weaning the ventilator settings. Once she is more stable, they will have to get an

MRI to make sure her brain wasn’t effected in any way when she coded. They also want to do a

lumbar puncture and check all possibilities of infection. All of the doctors agree that the common

cold infection can lead to her being placed on the ventilator, but she should not be as sick as

she is. They believe that she should have been off of the ventilator by now, so they want to get

every bit of possible information they can to make sure when Ember is ready to come off of the

ventilator, it is safe to do so and we can have some sort of idea as to what caused all of this to

happen.