After PJ's second surgery seizures begin quickly. At first they appeared as flushing and twitching episodes that would last up to a few hours off and on, mainly at night or naps then progressed to full on "old school" seizures very similar to what they were before. At first they happened at night and at nap time. His eyes would pop open, he would look terrified and in pain, limbs would go stiff and jerk, all the while he would be looking through us. When he was done he would finally take a deep raspy breath and off to sleep he would go. Physical Episodes started happening up to 20 times in a 24 hour period and no less then 6 times in a day. We begin giving Medazolam daily to cut up close clusters, sometimes even twice a day. It became a nightmare. All his progress we were seeing after his second surgery was gone and we were back to square one. We feared that he was again in constant subclinical seizure.
Thankfully PJ has a very awesome group of doctors and they got him straight in for an overnight EEG which turned into a two night EEG where he had multiple seizures from the temporal lobe. He also had visible seizures that did not register on the EEG so they thought they were sleep terrors (we knew better then to think that...we just knew they weren't). His parietal lobe also had abnormal waves...the only lobe not showing any abnormality was the occipital lobe. We met with Paul's surgeon not long after all this as things progressed and he let us know his Insular lobe looked like it also was dysplastic and it was very deep in the brain. He told us the plan was that instead of jumping straight for a hemispherectomy he wanted to try and take the insular lobe, temporal lobe, and a part of the parietal---leaving the occipital and his motor strip. Although we were pushing to just take it all our trust with his surgeon is huge and we knew he has his best interest in mind. His surgeon moved his schedule around and got PJ in a week-two weeks after our meeting.
watching PJ sleep before surgery
Surgery day was bittersweet. Hopes were high, nerves were high, and we were ready to have (hopefully) his final surgery. PJ had not been sleeping well at all as he seized all night so he was out cold up till they put the mask on him to put him under. Of course he woke up screaming right when it hit his face. We kissed him and said our goodbyes as we had done before and parted ways with our baby to begin our wait. The fear of not knowing how your baby will be after NEVER gets easier, it's the unknown that really turns my stomach...and there is PLENTY of empty time to wonder and think of different outcomes.
When we met the surgeon before going back to see Paul we were told the insular lobe was so damaged it felt tough. He told us it was rare to find dysplasia like that that it was constantly firing off deep in there. We were told that they removed all they wanted to and that they pulled the vessels to the motor area away from bad brain to spare PJ physical deficits and hope that all the dysplasia had been removed. When we saw him he was able to move all of his limbs and he seemed to be doing 100 times better then his last surgery. Two hours after being with him he seized from his motor area. We were completely bummed. The surgeon came in and told us not to worry and that it isn't something to really worry about from the trauma done to that area. We have to wait and if he starts having more then we go from there. He also informed us that based on his post op scan it didn't look like Paul should be moving his left side at all but he seemed to be doing pretty good with it so far. We were also informed that it didn't look like PJ had suffered a stroke from the operation which was something we knew he was at high risk for with where they were operating.
After surgery snuggling with Momma
About twenty hours or so after the surgery PJ astounded us all by scooting himself out of bed and walking---UNASSISTED! We were in complete shock! He began babbling and playing also, he was like a new kid!
Forty Hours after surgery we were released do to how phenomenally well PJ was doing. I couldn't believe that his last surgery put him out for so long and this more extensive surgery barely even phased him---goes to show there is absolutely no predicting how things will turn out!
PJ the first morning home
We are now nearing two weeks post op and PJ no longer needs occupational therapy and has very very very little physical deficit. In fact he seems to have gotten better with his "weak ankle". His speech has made a complete 180 as he is now imitating EVERYTHING that gets said....granted his words are still not nearly as clear and precise as it should be, he has still showing quick improvement. In two weeks he has started saying One More, My BeBe (what he calls his blanky), Sissy, Open, Cut, Key, Cat, Hat....and I am sure there are plenty others I am forgetting now....but the point is that it is getting much better. We were told by his therapist that if this was his last surgery that in a few years it would be nearly impossible to tell that he has had almost half of his brain removed.
Now for the scaryish news, PJ has began night twitching as he did before throughout the whole night in waves. The twitching seems rhythmic and it has us on full alert. He has been complaining that the back of his head is hurting which seems odd as he has never done this after his other procedures. We will be addressing his doctors with our concern at the end of the week just to put our minds at ease that perhaps this is not at all seizure activity but just "normal" healing signs.