Moments after I posted the last blog entry I returned to the PICU and found we had our answer. Gabrielle had 3 seizures in the time I was gone and has had 11 more since then. The seizures originated from the temporal and parietal lobes. All of the doctors, without reservation, have recommended functional hemispherectomy. Gabrielle will go down to the OR about 11am this morning to have the right hemisphere of her brain disconnected from the remaining structures. The doctors estimate it will be a 4-8 hour surgery. They predict about a 90% likelihood that she will be seizure free. The surgery will affect the motor and sensory function of the left side of the body and will also cause loss of half of the visual field in each eye. It can cause hydrocephalus which would require the placement of a shunt so we will be praying Gabrielle does not experience this complication.

The peace we have going into this surgery is amazing. God has faithfully answered our prayers and has lead us through this entire process. We know without a doubt that this is God’s will. Gabrielle was supposed to have the final stage of her surgery on Monday. It was rescheduled for today so we could monitor the spiking for a couple more days. Monday we hadn’t seen any seizures so we would have closed her without further resection. Can you imagine the devestation we would have experienced if the seizures had returned days after surgery was complete? I am so thankful that God has orchestrated all of this and that He continues to lead us through this storm.

I will post with an update later today.

Love,
Kelly

Gabrielle has definitely improved since I last posted. Thanks so much for all of your prayers and words of support. Her blood pressure and temperature have returned to normal and she is again taking in fluids and food. She has grown much more irritable over the last few days and is having trouble sleeping at night. She really just looks pathetic at times and I am so glad tomorrow is the final stage.

The plan for tomorrow’s surgery is still up in the air. We have not seen any seizures since the resection a week ago. Gabrielle has been taken off all of her anti-convulsants to see how the spiking over her motor-sensory area responds. The doctors are hesitant to remove such an important area if the seizures have stopped. The concern is that spiking could lead to the return of seizure activity in the future. If we see seizures in the next 24 hours we will proceed with further resection if we do not then we will proceed conservatively and remove all the grids and close her up.

This decision is obviously in God’s hands. So many bible verses have flooded my mind over the last several days. Among these:

Proverbs 3:5
“Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.”

Matthew 6:34
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Philippians 4:6
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”

Psalm 46:10
“Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”

And so I am constantly reminded to seek God, trust God, and worry not because He is Lord and He knows the path we should take. So we will sit in our room the next 24 hours continuing to wait on God. Waiting for Him to reveal His decision to us and praying the peace that passes all understanding will be ours.

I will update tomorrow.
Love,
Kelly

Gabrielle has had a rough day today. Her blood pressure has been running high, she has a fever, she is vomiting up all fluids, and she is pretty withdrawn and sleepy. Gabby’s left side has recovered amazingly well from the surgery. She was trying to pull a splint off using her left hand. Dr. Weiner was impressed! She is currently having another MRI completed to check for placement of the grids and electrodes.

We have not seen any seizures but the neurologist reported fairly regular spiking in the motor area and parietal lobe. He said he would proceed with hemispherectomy at this point if Gabby was his child. It was hard to hear about the continued spiking but at the same time we’re relieved to hear about it now while her skull is still open rather than a month from now. Still, it is so difficult to sign your child up for a surgery knowing it will result in new deficits. We have much to discuss with the doctors as we begin to make this next decision. We pray that God would direct our path and that Gabby would begin to feel better.

Thank you for your continued thoughts and prayer.

Love,
Kelly

Surgery is over! Dr. Weiner just came out to let us know that everything went as planned. He was able to map motor responses which was an unanticipated bonus. He removed the remainder of Gabrielle’s frontal lobe, all the way up to the primary motor cortex, and about half of the right temporal lobe. We should expect at least temporary left-sided weakness. He moved the grids and electrodes over the remaining right hemisphere to monitor for any further seizure activity. If these areas continue to produce aberrant electrical activity then the final stage may require a complete disconnection of the right hemisphere (hemispherectomy). So now the waiting begins. I’m praying that regardless of the outcome we would remain strong knowing God’s perfect character. Knowing He is all good and His plan truly is what is best for each of us.

Thank you for praying today and for the messages of support you have sent. It means so much knowing we are surrounded by so many loving and caring individuals!

Love,
Kelly

Tomorrow Gabrielle will have the next stage of surgery completed. We are going to proceed conservatively at this point. The data shows activity in the anterior temporal lobe, remaining frontal lobe, and the motor strip leading into the sensory area of the parietal lobe. Dr. Weiner and Dr. Devinsky have recommended that we resect non-eloquent cortex initially and only go back for the motor/sensory area if the seizures continue. Consequently Dr. Weiner plans to remove the remaining right frontal lobe and the anterior portion of Gabby’s temporal lobe. He will remove the tissue all the way up to the motor cortex including the supplementary cortex which means we may see paralysis of the left side but it should be temporary and movement usually returns in 1-4 weeks. Mapping out the area that does control motor movements in a child under five is normally difficult and the doctors often have to use anatomical landmarks to guide the resection. This just means there is a little higher risk of accidentally resecting a motor area which could result in a deficit.

It is our prayer that the resection tomorrow will control Gabrielle’s seizures and that she wouldn’t have any lingering paralysis or weakness. It is our prayer that any resection after tomorrow would prove unnecessary as it could result in long-term motor and sensory deficits of Gabby’s left side. We pray for God’s continued strength and guidance. Thanks for all of the amazing support you have provided through emails, messages, phone calls, etc.
Thanks for remembering to lift our little girl up to the Father.

I’ll update tomorrow.
Love,
Kelly

Gabrielle’s fever has improved and the cultures from her drain came back negative so this is very good news! Gabrielle has been having very frequent seizures and we have more than enough data to establish a surgical plan. It appears that things are localized to the anterior parietal lobe directly behind the motor strip and she is also showing some temporal lobe activity. The doctors will be meeting to establish a surgical plan hopefully tomorrow to determine how to proceed with resection. The concerns involve preserving sensory and motor function while removing enough tissue to stop the seizures. The doctors are also looking into moving surgery up if there is an OR time slot available before Wednesday. We will let you know more as the plan unfolds.

We continue to pray that the seizures can be stopped with no loss of function and that Gabrielle will not experience any side effects from this very aggressive surgery. We trust that God has a purpose and we trust His plan.
Thank you for continuing to pray for our little girl. We know that prayer matters!

Love,
Kelly

Gabrielle is doing pretty well. She had a second MRI completed yesterday to check for placement of the grids and depth probes. She slept a lot of the day yesterday between the sedation and the frequent seizures she was experiencing. We collected a huge amount of seizure data and the epilepsy team will be reviewing it all this AM. Gabrielle is much more awake today. She is playing peek-a-boo, pointing, and gives us an occasional smile. She is drinking well now and is just beginning to eat solid food. She had a fever the last two nights but we’re praying it is just related to being intubated for so many hours on Wednesday and that as she is awake more today it will resolve.

Gabrielle is out of surgery and stable. She did not require any transfusions and all of the probes and grids were successfully placed. She will be headed up to PICU in the next 30 minutes. Dr. Weiner said he just saw Gabrielle moving her left side which is really great! Thanks so much for thinking of us and keeping us in your prayers today!

Love,
Kelly

The opening incision was made at about 12:20 and Dr. Weiner estimated that Gabrielle may be in the PICU by 6pm. The outermost covering of Gabby’s brain (the dura) has adhered somewhat to her cortex from the previous surgery therefore the going is a bit slow right now but they are making progress in separating the two.

I will keep you posted.
Kelly

Just a quick update to let you know Gabrielle is asleep and the PICC line is currently being placed. She was a very happy girl this morning and had fun playing in the children’s play room in the admitting area. The picture above was taken this morning in the waiting area. She grew a little fussy just as we headed downstairs for her first procedure. I think she was growing hungry and thirsty. So far things are going well.

I will update more later. NYU has free WIFI in all waiting areas.:)
Kelly

Tomorrow is the big day! We will arrive at 7am and once Gabrielle is sedated she will have a PICC line placed, the stereotactic MRI completed, and then head into the OR. The surgery tomorrow entails suturing grids onto the brain and placing depth probes. Dr. Weiner said the surgery may take anywhere from 3-8 hours but his average surgery takes about 4 hours. He said sometimes repeat brain surgery can be much more tedious due to scar tissue,etc. and the risk of problems can be a little higher. We are praying there are no problems with bleeding, stroke, or neurological damage and that Gabrielle would tolerate the surgery extremely well.

Following surgery she will be taken directly to the PICU and remain there for approximately 7 days of intracranial monitoring. It sounds like the hardest part of this for most children is being confined to the bed or chair for so many days. Based on the results of this monitoring Dr. Weiner stated we may have difficult decisions to make regarding how much brain to remove. We are obviously praying things will be very straightforward and that the seizures are being produced in a very localized area.

We will continue to update as we can.
Thanks so much for continuing to follow Gabby’s story.
Love,
Kelly

Well, God has certainly worked things out. We now have a free apartment to stay in for the next month that is just minutes from the hospital. Who would have anticipated that the Foscue family at our church in NC would connect us with their cousin who owns a place in Manhattan that he is not currently using? Not only is this cousin, who has never met us, willing to let us stay there but he has offered his place to us free of charge. Amazing! We went to NJ yesterday to pick up the key from his parents and they were the kindest, friendliest people. We checked out the apartment and it is more than we could ever need in a very convenient location. God has once again provided through some very generous people.

We want to thank all of you who have contacted friends or family in search of accommodations for us. We received emails and calls from so many of you and we appreciate all of the time and energy you put forth trying to help us. We want to thank those of you who have tried to lighten our burden in some other way too. Whether it was offering to cut our lawn, watch our children, or by handing us a check. It is difficult to accept help from people because somewhere in the back of your brain there is almost an admission of failure, “I couldn’t do it myself”. At the same time, you are completely overwhelmed by the other person’s act of unselfish caring. You find you are unable to fully express how this act of caring has impacted your life and this is where I’m at. Words really can’t describe how each of you have touched us and “thank you” just doesn’t seem enough.

We completed pre-surgical testing yesterday and everything went smoothly. We are waiting to hear about Gabrielle’s OR time slot for Wednesday, June 25th. I’m beginning to get a little anxious about this surgery. Last time it seemed like such a “no brainer” when we chose surgery. This time Gabrielle is not quite as sick and the surgery more aggressive so I find that uncertainty creeps into my mind at times. I always seem to be reminded in a timely way though that Gabby really does need something done and that God is orchestrating all of this. Then the uncertainty is gone until the next time I lose my focus and need to be reminded.

Please pray that this surgery will be a success. Pray that the doctors will be able to isolate a localized area responsible for the seizure activity. Pray infection and fluid balance will not be an issue. Pray that Gabrielle will not be left with any lingering deficits. Pray that we will be provided all of the strength necessary to survive the weeks ahead and that this journey will bring Him all the glory.

I’ll update again before surgery.
Love,
Kelly

Gabrielle is scheduled to be admitted on Wednesday, June 25th for surgery. We found out today that pre-surgical testing needs to be completed at NYU at least 1 week prior to surgery. Gabrielle is scheduled to have all of this testing done June 17th. This means we will be leaving this weekend to drive up to CT so we can be in Manhattan on Tuesday. We will then have a week reprieve in CT before heading back to NYU for approximately 3-4 weeks.

Duff purchased an Apple laptop today so that he will be mobile and able to work easily from different places. The other children will be well taken care of by our awesome families. The challenge at this point is finding an affordable place to stay in Manhattan. Duff and I basically need a place to sleep and shower between shifts at the hospital. An organization called FACES offers free apartments to epilepsy patients but they are booked until September. The Ronald McDonald House in Manhattan focuses primarily on pediatric cancer patients but I did contact them today,as well as a social worker, to see if they might consider taking us in. We have looked into sublets which are wicked pricey at 4,000-5,000 for the month. We also received a list of more affordable accommodations from FACES that we will look into tomorrow. We’re not too worried knowing that God will somehow work things out.

I will update as I know more.
Love,
Kelly

We received the call on Wednesday evening from Dr. Weiner. The epilepsy conference took place and Gabrielle was discussed in great detail. The group felt that she would be a candidate for surgery, given the data and the risk-benefit considerations. Testing consistently showed right-sided activity so much so that they no longer feel left-sided monitoring through burr holes is necessary. Dr. Weiner stated that Gabrielle’s MEG was one of the most impressive he has seen. He said the abnormal discharges appear to be coming from a very localized area in the right frontal lobe region. This is great news!!

All of the doctors agree that this should be a multi-stage surgery. This means Gabrielle will first have pre-op testing completed and then be admitted for a stereotactic MRI which will act as a “roadmap” for the surgeon. Next, grids and depth probes will be placed directly on the brain to measure electrical activity and she will be in the ICU for 7 days while data is collected. Following this they will resect the problematic area and she will again return to the ICU for 7 days of intracranial monitoring. This is done to monitor for additional seizure activity which would suggest the need for further resection. Gabrielle would then go back into the OR for a final surgery after which they would close her. We should expect to be in the hospital for 2 1/2 weeks and we were told to plan to stay in Manhattan for an additional week to rule out any complications.

Dr. Weiner’s June OR schedule is full but he was planning to see if he could”borrow” some time from his partner. If that doesn’t work out things will be scheduled during July. We are waiting right now to hear back from them with our admission date.

During our last admission we were fully prepared to see bilateral seizure activity and know that surgery wasn’t meant to happen. It seems clear now that God has a different plan. He has orchestrated all of this from the beginning and it is amazingly comforting to recognize that only He is in control.

We continue to pray for strength, endurance, and child-like faith as we begin planning for this extensive surgery.

I will let you know when we learn more. Thanks so much for praying. God has made this decision for us and I am so thankful for that!

Love,
Kelly

We arrived home safely this morning from our trip to CT and NYU. I am exhausted! Gabrielle was admitted Tuesday 5/20 and was discharged Tuesday 5/27. Many seizures were captured on the Video EEG, we obtained an ictal SPECT, and completed the MEG. Dr. Devinsky plans to present her case on Tuesday at the next neuroconference. The data that has been reviewed thus far suggests Gabrielle will be a candidate but we will know for certain in the coming weeks. They will most likely recommend a 3-step brain surgery which you can read more about here: http://www.med.nyu.edu/communications/news/pr_176.html

Depending on the area needing to be removed Gabrielle could be left with multiple deficits such as left-sided weakness, loss of fine motor in the left hand, loss of half of her visual field, and memory issues. She is already at risk for attention and planning deficits associated with the removal of her right frontal lobe. Please continue to pray that God will make it perfectly clear if Gabrielle is a good surgical candidate.

Overall, the trip was a success despite many trying moments. We appreciate all of your calls and emails so much. A special thank you to Mimi and Pop for taking our large family in for so many days!

We love you!
Kelly