Day 11 Post-Op: The Good & The Bad

Well, I am happy to report that it appears we made some progress today. Unfortunately, there is good and "bad" in that progress. They finally did a video EEG today and Dr. Kossoff (Avery's neurologist) came in this evening and spoke to us about the results. Turns out that it gave them some really important and useful information (hey, maybe Mom is not so ignorant after all!). First, I'll give you the good info gotten from the EEG: (1) there was still no seizure activity coming from the right side (that is VERY VERY good, we NEVER want to see that); and (2) the crying and back-arching episodes do not appear to be seizures (also, very good, but that means we still don't know what they are for sure, though there are other ideas). The bad (or maybe just not-so-good) is obviously not ideal as you will see, but it also is NOT the worst case scenario either (so we are SO THANKFUL for that). The bad is this: (1) in just the short half-hour or so EEG, Avery had a lot of seizures activity on the left-side of her brain, some of it occuring with a physical manifestation that allows us to say "she's having a seizure", but also a lot that is occuring when she looks like she is resting peacefully; and (2) because we know that some seizure activity is getting through to the body (which is why we are still "seeing" seizure activity), it is hard to know what effect these "silent" seizures (combined with the others) could have on her ability to develop. Now, keeping all of the above in mind, I share the rest of what we talked about. If the crying and back arching episodes are not seizures as appears to be the case, it is possible that they are Avery's reaction to the seizures (her way of expressing her anger/fear/frustration with the seizure events), which might explain why she looks to be peaceful and then wakes to go into this crying/arching thing (reaction to a "silent" seizure per se). Because Avery is still having many seizures and she is (possibly) reacting strongly to them, then she is not in a shape that will allow us to go home for 6 months and buy some healing time to go back in later to perform an anatomical hemispherectomy in hopes of knocking out the seizures that way. Not only are the continued seizures a problem themselves to her potential developmental prognosis (i.e. did we gain any reasonable chance of better development since she is still having many seizures), but you also can't do therapy and try to drive development on her in her current state because she is not cooperative in this "angry/upset" state of crying and back arching (which occurs quite often all through the day unless she is fairly sedate and you are doing nothing to stimulate her). So, Dr. Kossoff talked about the likely need to go back in earlier (much earlier) rather than later...recognizing that they can't send Avery out of the hospital or to concentrated therapy like she is now. That said, he called the neurosurgeon (Dr. Jallo), who happend to be out of town this week for a conference, and approached him about going back in surgically in the very near future. Dr. Jallo has agreed to do whatever they and we determine along those lines. Dr. Kossoff then mentioned to us the possibility of next week. While it is a hard thing to process well right now, we are happy that there were some reasonable answers today and, more importantly, still treatment possibilities (still a chance for her to be seizure-free). We were most fearful of hearing, "there is nothing else we can do, this is how she will be". So, while we are not liking the thought of having to go back in so quickly, we are thankful that there is still something to be done for our Avery. Of course it means that we won't be back home anytime soon and that we will need to find the strength to get through the surgery (one that is risker on many levels) again. Also, Dr. Kossoff said that things could still change or settle down this week (and to keep hoping for that), but at least there is a plan for progressing if they don't. It is still possible that the GI doctors could determine that it is a reflux issue (the crying/back arching), but Dr. Kossof thinks its not highly likely. However, you never know. GI should be coming around again tomorrow and we expect that they will perform some tests to determine if reflux is a possibility. So, it is possible that tomorrow could bring a new answer or validate the not absolute ones from today. Dr. Kossoff did increase her Ativan dosage quite a bit to try to affect seizure control, so we will see what effect that has on the seizures that we have been "seeing". Avery will also be off all pain meds as of midnight tonight...one less drug in her little body, at least for now. Any maybe, just maybe, we will luck out, and God will clear things up this week. One way or another, He will take care of Avery. We pray it is the easier of the two paths, and we ask that you pray that too. Regardless, please keep up the prayers. We are feeling them all. We have very much enjoyed our time with our friends Kristin and Craig and their two boys (Ethan and Elijah) from Indy. The boys have been a great distraction for Caiden and just a joy to be around. Craig and Kristin, as always, have been great support for us. I know that being here helped them too...seeing Avery with their own eyes and all. God continues to bless us. He has done it many times with these friends, with all of you, and with complete and near strangers. Thanks for aiding us on this journey. You make it possible to be strong and to continue to focus and believe in anything. Your love and support is just a part of the way God is revealing himself to us. A Chaplain from the hosptial came and gave an absolutely beautiful prayer for Avery with us today. Her coming to us today, of all days (before any answers starting coming in) was no accident. I will keep you updated on what the rest of the week brings. Love, Holly