overload
Stacy is currently in the hospital. She started having seizures two days ago and we took her to the ER. She was stabilized and we brought her home. Yesterday, she started having more seizures, so back to the ER. They were not able to stabilize her with the normal routine and she had a really rough day. I will be leaving shortly to go see her.
Wednesday
5:30AM - got out of bed to pee, came back to bed (never a good thing for her)
6:18 AM - complex partial seizure
6:42 AM - complex partial seizure
6:55 AM - complex partial seizure that generalized into tonic clonic (I called 911 at this point)
?? - enroute to ER she had 2 seizures in the ambulance (I don’t which kind) They gave her Bursed (sp?)
7:30 AM - arrive at ER
?? - tonic clonic seizure in ER (they gave her Ativan)
?? - Blood tests showed her Dilantin level at 13.8, she continues to have small (shot duration) complex partial seizures where her eyes open/flutter and she stops breathing for a few seconds. The ER nurses/docs don’t recognize them as seizures and think she has some apnea problem and shove a tube in her nose (not intubation, some sort of shunt device to hold the airway open) and put a bipap machine on her (blowing oxygen into her system).
?? - They perform a head CT which comes back clear.
11:00 AM - they give her a Cerebrex IV drip, all seizure activity stops shortly afterward and she has no further problems breathing. She is snoozing as peacefully as you can on a hospital bed with wires and tubes all over you.
I went home about 3PM and Stacy called me ~5PM saying she felt better and wanted to come home, so I went and got her. She walked out to the hospital with a bit of a headache. She felt a bit warm that evening (slight fever). She ate half an omelete for dinner and took her evening Dilantin dose and went to bed early.
Thursday
?? - I could have sworn she got up to pee and came back to the bed again, but I was so tired, I’m not sure if I’m remembering the night before.
5:48 AM - complex partial seizure (I’m extremely concerned at this point)
6:01 AM - complex partial seizure generalizes into tonic clonic (I call 911 again)
?? - She has a tonic clonic again right as we are at the counter in the ER (they give her Ativan)
?? - They don’t stick the tube in her nose or put her on the bipap, but give her an oxygen mask. She continues to have infrequent, small complex partial seizures like the day before.
?? - They take a chest X-ray (I never got feedback on the result, but I assume it was clear)
?? - Her blood Dilantin level is 22.7 (very troubling as that is the high end of the therapeutic range and she has never had seizure activity with that much medication in her system)
?? - they give her Cerebrex IV drip (this time, the small, complex partial seizures do not stop). This is the first time ever that she has been hospitalized for seizures and Cerebrex IV does not stop her seizures.
Noon - She is admitted to the hospital and moved to a room.
12:15?? - right after moving her from the ER bed to the room bed, she has a tonic clonic. They give her more Ativan.
I left the hospital to get some food and take care of a few errands. The nurse called me on the cell phone to tell me they moved her to ICU because she continues to have seizures.
~2:30PM - I return to the hospital and meet the neurologist. He asks for permission to perform a lumbar puncture (spinal tap) to test for meningitis/encephalitis. He also prescribes Propofol and Keppra (Levetiracetam) via IV. I have to leave ICU until 4PM (visiting hours are open during 2 hour windows).
4PM - I return to her room and she is shivering. Her eyes are not fluttering, so I think it is because she is cold (the room is cold like a meat locker and she is running a low grade fever). I ask the nurse for an extra blanket and she also adjusts the thermostat in the room. They had just started the IV drip of Keppra about 15 minutes before I arrived (after they finished the spinal tap).
She stopped shivering when the room warmed to a reasonable temperature. The nurse removed the exrta blanket and Stacy slept comfortably without any further (noticable) seizure activty. Her breathing was steady and she was calm.
I left at 6PM (end of visiting hour) and returned home. I just called the hospital and she has not had any further seizure activity last night or this morning. She is still running a fever. She is responsive now, but too drowsy/confused to hold a conversation - she drifts off to sleep. I will be seeing her shortly.
Prior to Wednesday, she had not had any seizures since her trip to the ER last January (~six months ago).
June 13th, 2008 at 4:42 pm
I am so sorry to hear this Bernard.
Give Stacy my love, and I will be sending healing thoughts her way.
Take care of yourself too.
June 13th, 2008 at 8:22 pm
Bernard and Stacy…..GEEEZ!…….Renee and I wish you guys a break and a half! Stacy please get well soon! Bernard please get sleep soon!
Longshot….but did you veggie-tarians eat some bad tomatoes? Not trying to make light here…the fever made us think about that.
Spencer and Renee
June 14th, 2008 at 6:51 am
Stacy’s fever may have broke yesterday afternoon (her temp was normal ~4:30pm when it was taken while I was there). I suppose if she has salmonella poisoning, they would have found it out with all the blood tests they do. I don’t think that is the case.
She was doing much better yesterday afternoon. She was conscious (although very drowsy/tired) and responsive. She was too weak to sit up unassisted or even hold a pencil to write. She also had difficulty talking (I’m not sure if she bit her tongue during the seizures or if her tongue and throat were just really dry from breathing through the mouth for so long).
She would be alert for a couple minutes and then drift off to sleep for a while and that pattern repeated while I was there. She was able to drink some soup broth at lunch and eat a few bites at dinner time, so I’m hopeful that she will be doing much better today.
She is no longer on the Propofol and the nurse said they are continuing with the Cerebrex and Keppra, but I only saw them administering Keppra. In any event, she has not had any further seizures since early Thursday afternoon.
June 14th, 2008 at 9:16 am
You make sure that soup broth isn’t made with MSG additives. It needs to be 100% home made not from a package.
Glad to hear the positive improvements.
Did the blood tests come back negative? I do hope to here more good news.
Your whole family is in my prayers.
June 15th, 2008 at 4:13 am
My thoughts and prayers are with you both. It is tremendously unfair that great people such as yourselves live with such fear and worry. I hope that Stacy gets the best treatment possible and is able to come home soon…for good.
June 15th, 2008 at 8:31 am
Get well soon Stacy. You are in my thoughts and I pray the doctors get this figured out. Hopefully, they have the right mix of meds for now. Get your rest and we hope to hear from you soon.
Bernard, I don’t know what to say. You two are doing everything you can to fight this and it still comes back. Don’t be afraid to vent on one of us if you need to. This is one of those “not fair” times and we are all behind you 100%
Take Care,
Dale
June 15th, 2008 at 8:35 am
Thanks all. Stacy looked a lot better yesterday. She was able to talk much better, had more energy, and had enough strength to hold a pencil and write. She also managed to eat some solid foods. She was still drowsy/borderline nauseous and said she was seeing patterns (like scrapbook pages) when she closed her eyes.
They were supposed to take an MRI yesterday afternoon, but the results likely won’t be available until tomorrow (I don’t think the radiology folks work on Sunday).
June 15th, 2008 at 10:22 am
I hope Stacy is back to herself real soon. My prayers and thoughts are with you.
June 15th, 2008 at 9:22 pm
It’s amazing how much difference a day can make. Stacy looked awesome today. She was alert, energetic, speaking clearly - as if nothing had happened - and functioning on all cylinders. She was able to sit up and even stand up unassisted for a short period of time.
Her memory recall appeared to be normal. She remembered everything that happened Tuesday (leading up to the first batch of seizures Wednesday morning), and pretty much everything that was on our calendar (scheduled events).
She was eager to leave the hospital right away, but that wold not have been prudent just yet as she is still battling a bit of nausea that prevents her from eating more than a couple bites of solid food. We suspect the nausea is from the Keppra, but she should acclimate to that quickly.
She is no longer in ICU. She was moved to a regular bed. The MRI results were negative, so I suspect (or hope) that barring any new issues, she will be discharged tomorrow (assuming she is able to eat and keep food down).
June 17th, 2008 at 8:49 am
She’s home.