Finally an improvement. Starting last night the seizures are gone (touch wood). The news was that the lab results showed Ella had both a urinary tract infection and an ear infection. The antibiotic probably started working and Ella stopped seizing. This was a huge relief. It was good to discover that there was a reason for the seizures. The IV turmoil is continuing. Last night Ella lost her IV and they were unable to find a suitable place to insert a new one. Her hands and legs look like a drug addict’s. I gave her the Phenobarbitol orally but there was no solution for the antibiotics. This morning they are trying to find a way to administer the same antibiotics in a different way. Maybe an injection to the muscle. Last night and this morning were a breakthrough in that I managed to get a few smiles from Ella and she is much more alert and into things, looking about optimistically and generally in a good mood. An IV will have to be put in though. (And I cringe at the thought of them attempting that).
It is necessary for the MRI that she is scheduled to have. It looks like our main contact will be Dr. Duffy from Epilepsy. It also seems like there is starting to be a long term plan. Based on her condition, the prognosis is for a constant battle with ever increasing seizures. (There are exceptions to that but they are rare, and till now we have not had too much going for us in the luck department). Things are pointing more and more towards a Hemispherectomy. An operation that removes half the brain, the abnormal half. The EEG results showed that most all the seizure activity is coming from the right side of the brain, making Ella a good candidate for a successful procedure.
The operation sounds terrifying; however the indications are that it actually improves Ella’s chances of developing ‘normally’. In any case the ideal age for that is between one and three. The immediate challenge is to control the seizures.