Here is information on what I will be talking about: VNS CLICK HERE
When we checked her VNS last time at the neurologist he said if was no longer working. He hadn't checked it the past couple times we went for a visit so when it stopped we have no idea. I do know that Lily was doing fine off Vigabitrine for 6 months then while on the study all of a sudden she went crazy with seizures so was it the study med or did the VNS shut off? We had no idea so I will willing to see by having the VNS battery replaced and that is what brings us to today:
It was quite an eventful day. We get to the hospital at 6:45am; go back to pre op where we sit until 10am. They take her back and tell us it will be a short surgery. Andrew and I grab some lunch, check with my mom on the other kids (who were great) and try to relax, knowing she is in good hands, one of the best neuro surgeons in AZ is doing a simple procedure on our baby girl. I rush Andrew through lunch knowing I would feel more comfortable in the surgery waiting room and there we wait. We read Cosmo and laugh. Andrew let’s me know how right the magazine really is on pegging men. They are pretty spot on. Then in walks neuro surgeon. He is shaking his head and looks upset. My heart beats 4 times the normal rate, what is he shaking his head about? He says he has been trying to get the device to work with the new battery. He said he tried and tried and he even called the manufacturer, he came to the realization the wires around the vagus nerve are what is not working and came to talk to us. He said we really have to decide if we want to have the VNS because it can cause severe damage replacing those wires. I said absolutely not and he said he would leave them hanging just in case and just take the battery out and close her up. About close to an hour later they let us go in and see her. She is still sleeping and looks so beautiful. Eventually she wakes up; although groggy she was in a good mood. We got some pudding and gave her the meds she missed in the AM. We spend an hour or so in post op and head home. Lily was fine for about 2 hours and now the crying has begun. I’m sure she is hurting, she has a good size incision and who knows how much messing around in there they were doing trying to get the thing to work. They didn’t give her a rx for pain meds though and she just got some Motrin. She is still crying and crying hard. Poor girl.
The good news is Lily no longer has a large device near her armpit; bad news is I think it was helping her when it was working and I looked forward to having it back in and working. But we aren’t new to disappointment. Lily still has several seizures a day. She is on a full dose of Banzel and while we are seeing a difference in her drops and jerks, we are seeing more tonic clonics. Sigh. It is always something. I hate seizures.
So that is our day, Lily no longer has a VNS. She is in pain and I’m praying she will be feeling better and soon.
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