The Adventures of a Video EEG

First thing Monday morning, I arrived at the house to meet Aldina, Adis and Anes and we headed off to the hospital so that Anes could get all "wired up" for the video EEG. Tina, the interpreter who has been helping us met us there at 9:30 am. It was off to registration first, which went surprisingly smooth, and then to the EEG technician room for placement of the electrodes. Anyone reading this who has experienced a VEEG with their own child (or seen a hook-up done) knows what an unpleasant experience this can be for a young child. Anes was no different. He did NOT like it one little bit. Of course he would not...he could not understand what they were doing to him. Prior to this, Anes' EEGs were never more than 20 minutes long in Bosnia, thus they did not require having the electrodes glued down to the head. Once all the leads were placed and Aldina could pick him up, he calmed down a great deal. But he was tired after all that commotion! I have to admit, he looked pretty darn cute with his little alien netting on though (see for yourself!).

After this, it was off to the overnight room for the family. The plan was to record activity for 48 hours. Dr Cohen stopped in to make sure things were going well and see if there where any questions. The Pediatric team also came in and took a full history on Anes to make sure he was all well from the general pediatric/child health side. Since Anes was asleep, they decided to come back later to do the physical exam...which was a good thing. Tina stayed until Adis and Aldina were comfortable in the room and knew the protocols, etc.. The hospital's PR/Communications team came in and talked to Aldina an Adis about their story and that they would like to do some internal video taping, in hopes that everything would go well and they would be able to share the story nationally to help other families and spread awareness. Adis and Aldina understood the purpose and were gracious enough to easily agree, and they learned that the crew would be in about 5 pm to start filming material when Dr. Cohen would be back to talk to them. Aldina asked for Tina and I to be around at that time if possible and we both agreed. By the time I returned at 5 pm, Anes had woken, was happy and already showing those with the camera's just how special he is. He definately had an effect on those people!

The filming of Adis, Aldina, Anes, and Dr. Cohen (with interpretation provided by Tina) appeared to go very well. The PR/Communication team really seemed to be getting excited about what they were seeing and learning about this child and his family. I had the chance to talk to those in charge and answer some of their questions. Eventually, they took Dr. Cohan aside and did a short interview with him about the surgery...what it is, why it is important, what it can mean to Anes, what happens without it, etc. They then also asked me to go on camera and share how the family got here...how they became connected with me, The Hemispherectomy Foundation, and ultimately Dr. Cohen and Methodist Hospital. They also wanted to capture the perspective of a parent who has been through the surgery and what it means to families. It was an honor to take part in that and I hope that I did all of our hemi families justice.

During this time, Adis and Aldina did learn that Anes is having more seizures than they could see with their eyes (clinical seizures vs. subclinical seizures). That in fact, he is having very little non-seizure time. Aldina shared that this was hard to hear and that they didn't know before. We talked about how this was not a surprise to the medical team though, as most HME kiddos have as many, if not more, seizures that can't be seen as can be seen with the eye. And we talked about how this information just made it more apparent that they are where they need to be and doing the right thing for Anes. The other thing they learned, which is what many of us had been holding our breaths to hear, was that so far it appeared that the activity was only coming from the right HME side. They would learn more about the EEG the following morning when Dr. Patel, neurology, was scheduled to come talk to them.

All in all, it was a good day, though Anes might strongly disagree :) Good news and no surprises. Not sure you can ask for more from a medical standpoint!

After getting some giggle, smile and play time Anes, I headed out so that they could all settle in for the night and get some rest. Tina and I said that we both would be back the next morning at 7 am when Dr. Patel would be in to talk about the EEG in more detail.

The hospital took great care of them all day, even making sure that Adis and Aldina had food and that Anes' needs were able to be met...I'm sure in so small part to Dr. Cohen and the expectations he made clear to hospital staff!

So, tomorrow is another day...but all things are looking good! Praise God! Keep praying for everything to go as hoped and planned.

Peace,
Holly