Late February and March were jammed packed months. Appointments, planning, pre-op and surgery. April is keeping the same momentum. But, back to March. On March 12th, as you know from my last post here, Kerstin had her VNS implanted. The surgery went well, she is recovering nicely, she has now has more "Scars of Strength", and they have healed very quickly when compared to previous surgeries. I think that is because none of the VNS incision were as large or as deep. Still, she had some tenderness for a few days afterward but that is all gone now and our journey is moving along.
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| Pep talk and kisses before she heads off to surgery. |
April Fools Day 2019 was spent in traffic and then at Children's of Alabama for a full neuro day! Traffic on a Monday into Birmingham, AL...horrific. We already had a 2 hour drive there but Monday's turned into a 3 hour voyage. Remind this mom, no more Monday morning appointments! Mid-mornings and afternoons, maybe. Anyway, once there, down to her neurosurgeon. He was pleased with her healing and we are discharged from him unless/until there are device concerns or at the time for a new battery.
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| Bandages removed; three days after surgery. |
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| Two weeks post VNS placement. |
Back up to her neurology to see the nurse practitioner (first time meeting her and it was good meeting) and neurologist. This was where the bulk of the day was spent. No complaints at all because things were required to benefit Kerstin. Educational for this mom to again, benefit Kerstin. They are needed. I truly believe this is one of the things that will prove to be a saving grace on this Seizure/ Epilepsy journey. On the lowest "milliamp" (new word alert) or pulse settings, of her VNS, we are already seeing changes in her seizures. After implantation, we went ahead and started proactive swipes, to get her acclimated to the pulses from a swipe as well as my getting used to swiping the magnet over the stimulator.
About nine days after VNS implantation, Kerstin had visible seizure activity, shortly after I had given her a proactive swipe. So, I did another one to stop this seizure from increasing and approximately one minute later the activity was subsiding. Last week however, Kerstin's brain decided to test the system. Again shortly after her mid morning swipe, she started to have a seizure, one swipe, one minute later shes still involved. Another swipe another minute, still involved. This one was visibly increasing by the minute with twitches so hard, they could be seen in her neck (never happened before) and felt all the way to her hairline. Yet, after four swipes and four minutes they start to subside before Diastat was needed.
On the day of surgery, Kerstin's device was set at a lower end of pulses; her neurologist has a goal he wants her to get to, depending on how her brain and body reacts to pulses on various levels. At this appointment, her milliamps were amped up a bit. Again, my champion did well with things minor increases. Her next increase will be done remotely! The wonders of science, technology and medicine!! We will be back in office in a few weeks for additional talks and another increase to her milliamps.
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| VNS Interrogation |
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| Kerstin's VNS profile. |
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| Alert and attentive! |
Kerstin's neurologist and nurse practitioner are happy she has the device in place. I am already happy that we went ahead with this advancement and seizure treatment that does not include more medicine. Her nurse practitioner told me to look at the VNS as a sitter, keeping an eye on Kerstin even when I cannot. The device will kick in with pulses when it notices an increase in her heart rate, often signs of strenuous activity and heart rates increase during seizure activity. Also, it will notice those absent/staring seizures I may miss or think of as her just staring.
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| My very patient, patient. Entertainment in between appointments. |
We are now equipped with a little more knowledge than the days and weeks before. We also have a magnet hooked on her wheelchair (with her wherever she goes) and on the stand near her bed. She has her i.d. cards, one in her wallet and I have the other. We are once again, making some very important strides on this journey...Growing With Kerstin.
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| Always, always happy to go in and come out on the same day! |
More to come,
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