Plenty of Data

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!


Another MRI and More Monitoring

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.

Stage One is Complete

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!


Surgery Update

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.

Gabrielle is Asleep

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.:)

Surgery Tomorrow

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.

God Provides

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.

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Surgery is Scheduled

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.

We have a Decision!

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.

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