I kinda want to share my story to get it off my chest. So that maybe when I close my eyes it will quit replaying over and over.
So Wednesday night I bathed DD2 and put her to bed at 7:45 and she was totally normal. About a hour later she woke to nurse and I noticed that her nose was a little stuffy and figured she was getting the cold that is going around.
At 9:50pm I was texting back and forth with my brother in the kitchen and I hear a animal like noise but it is DD2 voice. I run into the bedroom to find her on her stomach having a tonic-clonic seizure. I pick her up and her lips are blue and her eyes are half open and shifted to the far side. She is making the weird -I can't breath noises-. I Run her to DH and call 911. DH thinks she stops breathing and is still holding her. She is ending the seizure by this time and is just twitching every now and then still making the weird breathing sounds. I lay her on the floor to asses if she has a air way. ( I work at a hospital as a monitor tech, cardiac is my thing and I know cpr. I have been there 11yrs and used to work the floor and have seen lots of seizures. All of this up till this point in the story is "normal" for a seizure that I have witnessed.
So she is now laying on the floor waiting for the ambulance to arrive. Her lips are still blue, hands clenched and her fingers are blue. Her eyes are closed and she is unresponsive. She is breathing but barely, very infrequent very shallow breaths and grunting on exhale. As the paramedics come in (maybe 5 to 7 min after I called) she lets out a cry and throws up and is back to being unresponsive.
We load into the ambulance where they put a pulse ox on her finger, check her temp (none) and o2 on her and the whole ride to the hospital (20 min) she is blue pulse ox in the 70's hands clenched doing the barely breathing. As we are turning the corner to the hospital she starts crying and her color comes back of course but she doesn't know who I am.
Once in the er they check her temp. She now has a fever of 103.3. We knew she had gotten a fever in the ambulance because they checked it several times as we noticed her body heating up. They did labs and a chest xray. They then said it was a febrile seizure and wanted to send us home. She had not even woken from the deep sleep that they go into after a seizure. All her labs came back normal. I told them I was not comfortable returning home 30 minutes away with out knowing why she seized and that I didn't think it was a febrile seizure. They admitted us for observation.
We got a room around 3am and DD2 finally woke up and knew who I was again. She seemed normal from then on out. They did a ua that morning and it came back clean. I have since taken her back into her dr and had the full ambulance report and after seeing that he isn't convinced it was a febrile seizure and we are seeing a pediatric neurologist.
My question if you made it this far is the "not breathing" thing for that long after a seizure 'normal'? I have never witnessed it and that has me more worried than anything else.
DD has no health issues and while we have epilepsy on both sides of the family (my brother and DH cousin) she has always been healthy. What is your thoughts and what are some questions you would be asking.