Rough first morning after surgery…
Things have not gone nearly as smoothly the second time around. Don’t get me wrong, Eli is doing fine, it is just another ball game when they take out part of the brain. He slept most of the night thanks to several doses of morphine from the nurses. He went for a CT scan around 6am this morning and luckily that was fine. Part of brain they expected to be missing was gone and there were no bleeding or swelling or anything unexpected. Throughout the night he had a lot of twitching and jerking that would often wake him up from sleep. This had me worried. He also would wake up and just sort of look around with a dazed expression on his face. He wasn’t interacting with us at all. I was really upset about this, but everyone keeps assuring me that this is normal. Around 9am he was awake so we tried to give him some water/juice. He guzzled 4oz. I kept trying to get the bottle away so that he wouldn’t take it so fast, but he had a death grip on the bottle and downed the whole 4oz. Then he quickly proceeded to projectile vomit about 3x that much all over me. We got cleaned up and then he went back to sleep for a while.
Around 10:30am, he suddenly woke up and sat up. Then he stood up and tried to get to me, and then proceeded to have a seizure. It was a typical cluster seizure like we see everyday, except there was less head dropping. It lasted about 3 minutes and sent me into a tail spin. I am not really sure why, since we expected that there was a good chance we would see post-operative seizures that would diminish over time, but I guess you always hope that this was the magic solution. This made worse by the fact that we were in PICU and not the epilepsy unit, so no one had any idea what to do. The nurses and residents kept trying to check his pupils which was driving me crazy. And, they kept asking if I was sure it was a seizure because they didn’t see anything and his vitals were fine. Thanks very much, but after 100s of daily seizures for 6 months, I am pretty sure I know what I am talking about. This was followed by the pediatric critical care attending coming in and basically standing there for 5 minutes nearly silent and just every now and then say, “Oh, sorry. I don’t know what this means”. Thanks, but can someone please get someone in here who knows something, ahhhhh!!!!
Finally, our neurologist, Dr. Goyal showed up. By this time, I was pretty upset and over-emotional. She reiterated what we had talked about yesterday. He was immediately post-op, we know that the temporal lobe is still having discharges, there is a lot of swelling and post-op change going on his brain and this is to be expected. We have no idea what this means for his long-term seizure control, it is really just too early to tell. She said it could mean that there is an ongoing seizure focus in the temporal lobe, but she is still very hopeful that with time, his seizures are going to slowly go away as the brain calms down.
My other worry this morning was that he just seemed so different than after his first surgery, so much less interactive and so dazed. She reminded me that he had just had part of his brain out and that this is to be expected. I have really been second guessing as to whether we made the right decision and whether this was the best option for him. She squashed those thoughts really quick. She said the area that they removed was very abnormal. It was hard, rubbery and calcified. We know from the grid mapping that when he had seizures, it was the first area that activated, meaning that it was likely driving his seizures. It is also possible that there is abnormal tissue in the temporal lobe that now that the frontal lesion is gone, will start driving seizures, but we won’t know that for some time. I guess about 50% of patients who eventually become seizure free after resective surgery have post-operative seizures. So now we just watch and see.
This conversation involved a lot of tough love for momma. She basically told me that I had to get control of my emotions, that this is going to be a long journey with a lot of wait and see, and I am going to need a lot of strength and energy to get through it. She said if I keep going with this amount of anxiety and negativity that I am going to burn out. The brain is a funny organ and it is so hard to understand. There is no black and white and every epilepsy case is so unique. There is no way to predict what the outcome of any of this is going to be, which is so hard for me. So basically, I need to work on just going with the flow and taking each step as it comes.
Things have been better for me this afternoon. Tough love actually works for me, and I have been feeling much calmer. He has been sleeping most of the time, but wakes up intermittently. He is still not very interactive, but he is making a little more eye contact this afternoon. He even smirked a little at daddy, when he was doing peek-a-boo with him. It was brief but it was real. We are now back in the epilepsy monitoring unit, which is more familiar and helps us feel more secure. He just seems so sad and even angry. He seems to be twitching less and not jerking himself out of sleep as much, so maybe that was the anesthesia effect. He did have another episode of vomiting this afternoon. Maybe tomorrow he will tolerate oral intake a little better. His poor left eye is now swollen almost completely shut and is a little bruised. He just looks so pitiful. The good news is that his vital signs are great, he is not requiring oxygen, he is peeing great. So maybe tomorrow all the other stuff will start to improve as well.