The day after I had discharged a certain Neurologist from Vada's room I was known. I suppose I may have already been talked about prior to this situation. I had moved into Vada's hospital room with her and I never left her side for any longer than ten minutes once, maybe twice a day. I knew I was the topic of many conversations because a lot of curious staff had come to talk to me about what was said between this certain neurologist and I the night before. Plus, as it turns out that not all parents are as blessed as I am, and they actually have to leave their child at the hospital.
That morning Amy came to sit with me. Vada had been removed from the EEG and we were waiting for the doctors to make their rounds.
I had noticed a change in Vada since the day before when the neurologist added the two extra medications. Vada was not really waking up. She was slightly awake when the tech was removing all of the leads from the EEG, but she didn't fuss or really even whimper. She was practically putty in my hands.
Amy and I had already discussed several things to bring up to the doctors when they finally came in.
Vada was asleep in her hospital crib when about thirteen members of the hospital came in surrounding her. They acknowledged us slightly and began their discussion on Vada's status. I listened intently. Our resident, a smug and arrogant man began to explain that the neurologist added two new meds the previous day and since then we hadn't seen any seizures. Therefore, in his medical opinion all seemed to be going very well. The head doctor then asked me if I felt that to be true. I agreed and said that we hadn't noticed any physical seizure activity. She then made a comment trying to rectify the conversation I had had with the neurologist the day before and asked to later meet with me privately to take a report to give to her superior. They had finished up their meeting and walked out when Amy said something about Vada not waking up so how can we tell if she is having physical seizures.
On a side note, just in case you were unaware..., West syndrome/ Infantile Spasms (which is what we think Vada has) have physical seizure activities, typically before and after sleeping. You need to be able to wake up to see those seizures and you need to be able to see those seizures to correctly identify and diagnosis the condition. Since she was NOT waking up, we were not seeing seizures.
I went out to the hall and asked if I could talk again with the doctor. With in a minute she was entering our room followed by her groupies of medical want to be's. I began to express my concern of the newest medications that Vada was placed on. She had only started her first anti epileptic medication two days prior and then was placed on two new anti epileptics the next day. How were we to know which one was helping and if something happened, like a bad side effect; how were we to know which medication was causing it. She agreed, but this is when the resident, the one who was on his own personal pedestal, chimed in; "Yeah, but its working isn't it..? he said. "She hasn't had any seizures... right?" I had had just about all I could of him at this point and this is when my sarcasm kicked in. I turned and looked directly at him and replied with; "Yeah, but she hasn't woke up!" That was it. The head doctor asked me what I would like to do and I said I want her off all of the medications. i want her to wake up and then for us to start again. One medication at a time, and she agreed.
If it weren't for Amy making an obvious statement I would have been left sitting in that room after our first meeting feeling lost and hopeless watching as Vada slept continuously. Luckily my meow was becoming a roar and I had Amy to thank for that. I had once again stuck up for Vada in her treatment. I had corrected something that was not right. I know now that it doesn't matter if one medical professional doesn't agree or even believe me, I know my daughter.
I may have not gone to college for seven years (or longer), but I have a PhD in my children and it is my job to take care of them and their needs. I feel like a stronger person because of these last two weeks. I have held my ground regardless of what anyone has said or believed. Plus, even when I was alone, I knew that God was right there with me helping me be the strong mother that I needed to be. I am proud of that and I am proud of myself.