Surgery went well and she recovered quickly without any problems. She hardly cried or complained at all which was a huge blessing but we are now facing some unexpected challenges.
Since the VNS implant we have seen an increase in seizure activity. We were told the first few weeks after recovery would most likely cause some increases due to pain. We waited it out and expected her to get back to "normal" after she fully recovered. The device is slowly ramped up every week until the desired settings are reached. She has only had 2 out of 6 adjustments and it has been rough. After every adjustment we have seen a huge increase in seizures, up to over 15 seizures a day. Some of these episodes can last up to an hour, so the majority of her day is spent seizing.
We think the VNS is actually causing seizures. We are frustrated and extremely disappointed. Our Neurologist said its unusual for this to happen but we have already talked to a few families who had these issues too and ended up turning off the device. All we can do now is push through the adjustments and pray things level out or turn the device off. We don't know what is best and have spent hours trying to decide what to do.
All we have ever wanted for Piper is for her to be happy and as healthy as possible. We have tried everything and sacrificed our happiness in the process. We have always been willing to do this for her and are at a point where we don't know what to do next. With so many seizures we can't get out much and when we try it's usually more stressful than fun.
We are praying for direction, patience and strength. Please pray for all of us. She deserves a break, please pray she gets one soon.
Annie, I check your blog regularly and will be praying for Piper and your family! You all have been through SO MUCH. Praying now.
ReplyDeleteThank you Patti!!
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