It's 5 am and David has gotten a lot better through the night. He was very unresponsive on his right side (from the grid being on the left brain) and just slightly responsive on the left side. Now he has been able to look at me and nod when I ask him questions. He is tired and not in pain. He could feel the breathing tube that is down his throat so I explained that. His hands are restrained so I had to explain that too. I read him some bible verses and he liked that.
His nurse thinks he will recover slowly and be in the ICU for 3 or 4 more days. Thank God he is gradually but definitely getting better.
Diagnosis update: Dr Maleeva said that they still couldn't quite distinguish frontal vs temporal lobe from the seizure data the grid picked up, BUT she thinks she could have if she could have done the brain stimulation. (That is sending impulses through the wires to the brain to see what happens. He needed to be alert for that and never was.) She said this is not the end and we can keep on if we want to, to try for David to be cured.
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Say hello by signing the Guestbook at the bottom, or leave a comment--click on "comments" on the post; scroll down in the window that pops up and sign in as Anonymous.
Pray for David
+Pray for no seizures and healing from epilepsy.
+Pray for no colds (often come with seizures), wisdom in matters of health.
+Thank God for the period of no seizures from July 31 2008 to July 7, 2009, even with one less medicine and his VNS implant being turned way low inadvertently.
+Thank God for a full recovery from the trauma caused by the grid on August 1 2008.
+Thank God for the period of no seizures from July 31 2008 to July 7, 2009, even with one less medicine and his VNS implant being turned way low inadvertently.
+Thank God for a full recovery from the trauma caused by the grid on August 1 2008.
+Thank God for strength during the first four semesters at college.
+Pray for strength and wisdom through the third year, taken from home.
+Thank God for three months with no seizures, from early August to early November '11
+Pray for that pattern, of no seizures or even auras, to resume and remain
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My angel!
2008
WHAT'S UP WITH DAVID--updated 9/19/09
David was diagnosed with focal epilepsy in 2000.
He has tried seven meds and had a device implanted, but still has had seizures and side effects.
Since summer 2007 he has been on a track toward surgery, which can be very effective. In July 2008 we got to the final stage which is to have grid surgery.
Grid surgery on July 29 involved placing a silicone grid of electrodes directly on his brain. A cable connected his head to an EEG screen, and he stayed in his hospital room to have seizures. If the grid shows where seizures come from then usually the spot can be removed and the epilepsy is gone or alleviated greatly.
Things went wrong on August 1 when the grid turned out to be very irritating and caused a lot of fluid buildup and swelling so it had to be taken out in emergency surgery as David started slipping into a coma. The opportunity to do therapeutic surgery was lost for the time.
But things started going well as he had no seizures for 11 months and 1 week after coming out of the hospital. Things are really good because he (accidentally) started taking one less medicine, and because his vagal nerve stimulator was (accidentally) set way too low after surgery, and still no seizures. This is very unexpected so maybe the trauma altered something in his brain and healed his epilepsy.
Despite some bumps things are still going well, with very few seizures. After asking for the VNS to be turned down, then having many more auras, turning it back up, and having sleep trouble, he has had seven seizures since July 7, '09. However, each seizure has been gentler than the last, and a common denominator has been found in many of them - looking at computer/TV screens too long.
He has tried seven meds and had a device implanted, but still has had seizures and side effects.
Since summer 2007 he has been on a track toward surgery, which can be very effective. In July 2008 we got to the final stage which is to have grid surgery.
Grid surgery on July 29 involved placing a silicone grid of electrodes directly on his brain. A cable connected his head to an EEG screen, and he stayed in his hospital room to have seizures. If the grid shows where seizures come from then usually the spot can be removed and the epilepsy is gone or alleviated greatly.
Things went wrong on August 1 when the grid turned out to be very irritating and caused a lot of fluid buildup and swelling so it had to be taken out in emergency surgery as David started slipping into a coma. The opportunity to do therapeutic surgery was lost for the time.
But things started going well as he had no seizures for 11 months and 1 week after coming out of the hospital. Things are really good because he (accidentally) started taking one less medicine, and because his vagal nerve stimulator was (accidentally) set way too low after surgery, and still no seizures. This is very unexpected so maybe the trauma altered something in his brain and healed his epilepsy.
Despite some bumps things are still going well, with very few seizures. After asking for the VNS to be turned down, then having many more auras, turning it back up, and having sleep trouble, he has had seven seizures since July 7, '09. However, each seizure has been gentler than the last, and a common denominator has been found in many of them - looking at computer/TV screens too long.
6 comments:
Thank you, Beth, for the update and thank you for what you wrote on the Shubin blog. Your eyes on the Lord are such a testimony. Praying for you all.
Colleen W
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