Today we were supposed to be discharged from the General Hospital. It has passed the 72 hours of video EEG testing on Rosalie. But the head of the Neurology department is intrigued with Rosalie’s history and is trying very hard to get one of her mysterious episodes on video and EEG. We are staying on at the General Hospital to have one last day of video EEG monitoring.
Pause with me to let me refresh my memory…
September, Doc 1 increased her Trileptal and her seizures increased less than 4 days later
October, Doc 1 increased her Lamictal and her seizures did not abate.
Thursday, Oct 28, she was prescribed Omnicef for a supposed lung infection that had been lingering for a few weeks.
Friday, Oct. 29, she awoke with the first of 3 seizures – she went from needing complete support, to needing gentle assistance walking. Doc 1 increased her Lamictal again. I discontinued the Omnicef.
Saturday Oct. 30, she awoke at 6am with a cluster of about 20 minutes of seizures. I took her to the ER. She was released from the ER. She had another seizure at 2pm, administered diastat for the first time ever.
Sunday, Oct. 31, she awoke at 1:30am with a seizure lasting 12 minutes. After the first 8 mins I administered diastat for the second time. Seizure continued for 4 more minutes. She was transported via ambulance to ER. Later admitted for observation. Augmentin was prescribed for her cough. Video EEG to last 24 hours or so was glued to her head. 3:30pm there were a cluster of events that suggest seizure activity in the very front of her frontal lobe. This included tonic stiffening, lip smacking, staring, vomiting, nystagmus, etc. Ativan was administered via IV.
Monday, Nov. 1, Rosalie still could not walk. She still had nystagmus to some degree, as well as tremors. Doc 1. tried to prescribe Vimpat, but the hospital refused to give it to her citing that it wasn’t approved for children under 17.
Tuesday, Nov. 2, Rosalie still could not walk without assistance. She still had tremors. Doc. 1 prescribed a Depakote and decreased her Lamictal. Physical therapist showed Rosalie how to walk with a walker. We were released just in time for me to pick Katherine up from school.
Wednesday, Nov. 3, Rosalie and I visited her new neurologist who promptly got her scheduled for a 72 hour video EEG with the docs here at the General Hospital. We went to the zoo, where Rosalie had a great time but didn’t have the strength or energy to walk for more than an hour.
Thursday, Nov. 4 I kept Rosalie home from school. She spent half the day laying on the floor, the other half of the day being ornery – picking on anyone she could get her hands on. She was definitely not feeling good.
Friday, Nov. 5, Rosalie admitted to the General Hospital and taken off the depakote.
Saturday, Nov. 6, Rosalie was taken off Trileptal and I kept her up until 2am.
Sunday, Nov. 7 Rosalie was given 1/4 of her Trileptal dose, and had hyperventilation and lights.
Monday, Nov. 8 Rosalie was taken completely off Trileptal, Lamictal dose was halved. The 72 hour study is now in overtime…
And so we are into our fourth day. We have seen nothing… no seizure activity, nothing even looking remotely like seizure activity. Not anything even looking like an ‘event’. It’s currently about 1/2 hour before bedtime, and I have decided that if nothing else happens, maybe they will release us on half the medication that she was on before she arrived. That would definitely be good!
Instead of being discouraged that nothing has shown up on the monitors, I am being hopeful that maybe she doesn’t need all the medications. I could be dead wrong on that, but it’s something I can at least hope for. The other good thing about this is that there is at least one highly regarded physician who agrees with me that the episodes she was having are seizures, even without seeing evidence on the EEG.
I am leaving here tomorrow and taking a long drive home to see my family for the first time since Friday morning. I am trying to focus on that. I really can’t wait to sleep in my own home again. To chat with my family. To see everyone and catch up on everything I missed. I am sure the noise level will be excruciatingly painful after the near silence of this hospital wing. Rosalie plays by herself in an almost complete silence. She plays with me very quietly too. She has rarely talked the whole time we’ve been here. I am seeing a little piece of Rosalie that I’ve never seen before. The calm, focused little girl that can play with her toys for 2 hours by herself. Her AD/HD meds work well, but she is so distracted at home with all the children, noise, and activity. Here she’s been able to do what she wants, when she wants. She hasn’t had to share with anyone, she hasn’t had any competition from anyone for my attention and there is no one who talks to me so she isn’t interrupting me constantly. Here, she never gets told NO.
Life will be full of changes when we get home. She will get to play with her brothers and sisters and she will get to go back to school for the first time in over a week. She will be able to see Daddy. She will be able to sleep in her own house. She will be able to go outside for the first time in a week. But she will have to sleep in her own bed (which she hates), she will have to share her toys and she will not be the center of everyones attention. She will be forced to wake up early and get dressed and go to school. She will be told NO.
Please help us through the night. This is the last day for trying to get the results we need. This is the last night we are to spend here. Please help me remain anxiety free, help Rosalie transition back to being at home. I pray for peace in my heart, and results that are meaningful. Thank you for taking care of my family, and I pray that you would protect us as we drive home tomorrow (over 2 hours).
Thank you Jesus! Amen