One of our good friends who has had kids in the hospital and is also a medical professional gave us a good piece of advice before we came. She said not to be too alarmed if Adam looked pretty 'roughed up' at times through the process. As a parent it is natural to have a strong gut reaction to seeing your child in apparent distress, but that it may not be that big a deal medically.
Evidently a typical part of having this surgery is swelling around the face and eye on day 2 or 3 as fluid drains from the region of the head that was opened up. The area around Adam's eye started to swell last night and by this morning his right eye was basically swollen shut. Nothing serious and mainly annoying for Adam, but all day he has looked like he had a terrible reaction to a bee sting or something.
This has been a rough day so far. He had his third natural seizure in the wee morning hours. Mid-morning the doctor came by and gave us our first sense that hopes of the best-case scenario outcome had dimmed somewhat. Late morning they came by to do mapping of Adam's language area. They had Adam read out loud from a picture book (The Armadillo from Amarillo). The plan was to then send pulses into certain of the grid electrodes and see which ones interrupted his ability to read the book. The first attempt lasted less than five minutes before it triggered another seizure (which happens). After a couple hours of recovery, they had a much longer reading session but then it triggered another seizure.
So at that point, he had had three seizures in about 8 hours and was thoroughly wiped out. He looks like he has been through the ringer. He has slept all afternoon after having some morphine again. They are also putting him back on seizure meds as they have seen all the seizure activity they need to see.
So surgery again first thing tomorrow morning. They will remove the grids and perform the MST procedure. The ultimate goal of being seizure free with no meds is not looking terribly likely (although it could happen) but there is still a decent chance that he will have some worthwhile benefit. And we will know that we have gone as far as one can with current seizure surgery technology, which is worth something as well.
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5 comments:
It sounds really rough. We are thinking of Adam and all of you, and still hoping that the second surgery at least helps a little, if that's the road you choose.
Love you all!
I'm thinking of you, Adam, Peggy, Brian, and Matthew. Although the results from the first surgery were not exactly what we all hoped for, you learned some important information about your options--which sound promising. Did Adam get to keep the copy of The Armadillo from Amarillo? :)
We're all in a better frame of mind today...we've had to stay flexible through this entire adventure. The one thing that we've heard over and over again is that Adam has never been a "textbook case." He has rarely done what was expected, his symptoms were unusual, and the deeper they delved into learning about his brain, the more surprises that they discovered. Ah, well. Adam would not want to be boring!!!
We may have to purchase our own copy of the book...Adam was not given the copy that he read! The funny thing was that at one point after Adam was no longer reading from it, the doctor looked around for the book, and we discovered Brian had it and was reading it. During the test, Adam only read part of the book...and Brian wanted to know how it came out!
I suppose it makes sense that Adam is not a 'textbook case.' He's far too individual and extraordinary for that! (Of course, his Auntie Sharon and I might be a teensy bit biased!) Glad to hear you're having visitors this weekend. Wish we could be among them. But perhaps we can try out this skype thing!
Adam, Peggy, Brian,and Matthew Louis and I are thinking of you.It is still good that the doctors and you could learn so much about what happens in Adam's brain before going on with the planned surgery so that the safest treatment options could be discovered. Indeed we wouldn't want Adam to be boring! We're sending lots of love to Adam for his recovery after the last surgery and big hugs for everyone.
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