Gabrielle Faith

Gabrielle had a pretty good night here in the unit. She rested comfortably with just Tylenol for the pain. We are trying to avoid narcotics as last time they seemed to cause nausea.

We had some friends from North Carolina crash our roof her in NYC which made for a very pleasant evening. They didn’t carry me on a mat or anything (Mark5:1-5) but they did drive all the way to NY to show their support and brought dinner, drinks, and dessert. Thanks Dave and Bobby for showing us the love of Jesus.

Gabby was wide awake at 4:00am after we changed her linen and gave her some medication. She asked for her siblings by name, she pointed to her head wrap and stated she was hot. She saw my iPhone and requested her favorite song. She sang along to the music and fell back asleep with the music playing next to her ear. She waved hi to the doctors that came by this am and is generally behaving in a very encouraging manner.

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Dr. Weiner just came out to let me know they are closing. He said Gabrielle tolerated the entire procedure very well. He said there was very little bleeding. He removed any suspicious tissue that remained. He removed an area in the right frontal region, the amygdala, and a little tissue that was lying over the thalamus. I asked if there were any obvious areas of connection and he said you remove the tissue assuming it is connected. He stated that he aggressively removed any questionable tissue.

Presently they are working on a titanium mesh closure to avoid leaving behind any soft spots like Gabrielle had previously. Surgery should be complete within the hour. She will have a post-op MRI and then head to the ICU.

I’m praising God that Gabby has been safely carried through another brain surgery. Please join us in prayer that she would avoid any post-op complications.

I’ll update later tonight.

Love,
Kelly

We arrived at NYU around 6:20 this morning. They took Gabrielle back to pre-op holding almost immediately. We completed all of the pre-op paper work and vitals while Gabby slept in my arms. She awoke right before we headed down for a presurgical MRI. She was in a very happy mood and kept asking to go to Mimi and Poppy’s house. We went into the MRI room and they put her to sleep in my arms. She fought this process for about a minute and
impressed me with her feistiness. She was kept under and delivered to the OR suite where I kissed her good-bye and spoke with Dr. Weiner briefly.

The surgical procedure itself began at 11:00am. Dr. Weiner expects to finish around 3:00ish. He will be focusing on the right frontal region where there is some residual tissue that may harbour a missed electrical connection.

This is it. This “redo” will be our final attmpt to stop Gabrielle’s seizures. I explained to Gabby that, “The doctors just need to make a “boo-boo” on your head to stop the seizures and then we’ll go visit Mimi and Pop.” I hope and pray that this is in fact the case.

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Surgery is scheduled for Monday Sept. 14th. Dr. Devinsky and Dr. Weiner presented Gabby’s case at neuroconference where 22 doctors unanimously agreed that Gabby is a surgical candidate. They feel the EEG data, presentation of seizures, and questionable area on the MRI give a compelling reason to go back in and make a final attempt to stop these seizures. Dr. Weiner plans to remove any remaining tissue on the right side effectively turning her functional hemispherectomy into a complete anatomical hemispherectomy. Dr. Weiner will also inspect the questionable area on the MRI for any further connection as well as reassessing all other areas of disconnection. This surgery should not leave Gabby with any further deficits. There is always the risk of nerve damage, stroke, hydrocephalus, and death but it is our prayer that she will come through this without any complications. This surgery will be one stage and should involve a 4-5 day hospital stay.

We are in the process of figuring out the logistics of getting Gabrielle to NYC for pre-op testing and then back again in a few weeks for surgery. At this point we are thinking Duff may stay here with the other children while I fly up to NY with Gabby for testing and surgery.

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We just spoke with Dr. Devinsky, Gabby’s neurologist. He feels pretty confident that these seizures are still coming from the right hemisphere. He stated that if you asked any epileptologist, looking at Gabrielle’s physical manifestations, where these seizures are coming from they would all agree they appear to be right-sided. He said the EEG data coming from the midline isn’t too surprising given the disproportionately small amount of tissue on the right compared to the left. He said if we saw seizure activity clearly coming from the left then he would be concerned. Dr. Weiner (Gabby’s neurosurgeon) and Dr. Devinsky agree there is a small questionable area on the MRI that could be a connection. Dr. Devinsky said it only takes about 100 missed fibers to result in the return of seizures like Gabby is having. Dr. Devinsky would like to present her case to about 25 doctors at the next neuroconference to see if they agree with his recommendation for more surgery. Dr. Devinsky feels are best bet is to go back in and remove any remaining tissue and obviously sever any missed connections.

We still need to speak with Dr. Weiner and get his opinion. We also need to discuss the risks of going back in a third time. Each time they open Gabby’s head back up the percentages for potential complications increase. Please join us in prayer that God would once again orchestrate all of this.

I will update as we learn more…
Love,
Kelly

P.S. I’m thinking Gabrielle will probably be discharged sometime today.

Gabrielle and Duff arrived safely in NYC Wednesday afternoon. They were admitted into the hospital by dinner time and had all of the electrodes cemented on before bedtime. For the first time Gabrielle really disliked this process.

Thursday they were able to capture 8 seizures all of which presented the same clinically as well as electrically. They are coming from the parasagittal region which is basically over the midline region of the skull. The doctors are unsure of how to interpet this data. They are seeing seizure waves in the left hemisphere but aren’t sure they’re actually originating on the left side. They say because there is such a small amount of tissue remaining on the right side, the amplitude is much smaller compared to the left, which can make it “appear” like the seizures are actually originating on the left.

The neurologists reduced Gabby’s Depakote because it has the reputation for causing an echo effect on the EEG. The doctors want to collect more information over the weekend and put their heads together on Monday in an attempt to decipher the data they have.

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Gabrielle is still having seizures. We reached the maximum dosage of Trileptal and then started transitioning her onto Depakote this past Thursday. She has had about 50 seizures since we began adding the second medication. They are really beginning to affect her daily routine. She wakes up most days and immediately begins having seizures. The seizures and medications completely wipe her out and she has been taking 4 hour naps. While she is awake she has been less active than normal. Her left arm which is already hemiparetic has grown increasingly toned with the return of seizures. She is no longer able to flex and extend her arm.

Dr. Devinsky thought it would be best if we could head up to NYU this week rather than waiting for our Duke admission date next Wednesday. Duff will be leaving to take Gabrielle up to New York sometime in the next 24 hours. She will have a video EEG completed to determine where the seizures are stemming from. There are basically three possibilities: 1(They’re coming from the left side(good side) 2)They’re coming from the remaining tissue on the right side and a small connection was missed or 3)They’re coming from somewhere deeper in the brain. Please continue to pray for our sweet Gabby.

We will keep you posted.
Love,
Kelly

Gabrielle continues to have seizures. We have captured several of these episodes on video. It is very sad to watch Gabby have a seizure and breaks my heart but I'm putting it "out there" to help other parents and to increase awareness. If you’re interested in viewing:

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Gabrielle went up to NYU for a video EEG in March because we were seeing some small episodes that looked like seizures. We were not able to capture any seizures over the 4 days during which she was hooked up. The neurologists did see some right sided spiking in the disconnected occipital area. We adjusted her medication during this visit and she came home on a slightly increased dosage of Trileptal and we took her off of the Lamictal.

For the 3 months that followed Gabrielle did really well and we didn’t see anymore suspicious activity. Then in mid June we began seeing some seizures again and after about a 2 week period she was experiencing 1-3 per day. We increased her Trileptal more after consulting with her neurologist and they dropped down to 1-2 per week. This past weekend however the seizure monster returned with a vengeance and she had a total of 17 seizures over the weekend. Monday, Tuesday, and Wednesday we had a reprieve but then yesterday and today she had 15 more.

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I just attended a wonderful women’s tea over the weekend hosted by some ladies from church. I was asked to share about my journey over the last two years and thought I would include my ponderings here on Gabby’s blog.

God has taken me on an amazing journey over the last 2 years. Ironically my journey began days after I attended a women’s bible study. A bible study during which we were encouraged to tell about a time in our life when we had an enormous gray cloud looming over our head, a time of sadness and gloom, a time when we were completely downtrodden. I honestly shared that I hadn’t yet experienced such a time but knew a trial or trials would certainly come at some point in my life. It seemed like days later that our life would be turned upside down. Our youngest child at the time began having seizures and this would be the beginning of my journey.

My journey would involve many heart wrenching days. Days when I would hold my seizing daughter in my arms and sob. My journey would lead me to many unexpected places. Places filled with sadness and suffering like the PICU of Duke hospital where we shared a room with a 7 week old infant who had been ejected from his car seat in a motor vehicle accident. My journey would bring unexpected people into my life like a family that had recently lost their 5 year old son in an accident and a 12 year old that survived a 13 story fall from a building. My journey would forever change me.

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