We got the test, coming down to the wire I called to see if we were approved at lunch on Monday. We were so we began making plans to get ready for the 6:45 check in.
We got the call from the doctors to review eating and such procedures for prior to sedation. They then told us to report at 8:45. I told them that was the time we originally signed up for but we were called and it was moved to 6:45. She went to check and there was some confusion, but we were the 8:45 slot. That worked better for no early wake ups and Stella didn’t need to go do 2 nights out of the house.
Nolan did just what I predicted and did better than we could have ever thought with the process. He didn’t love the wraps with numbing spray but once he was over it he was fine. One of the hardest parts for Nolan was the lack of food. The sedation didn’t start until 11:15. That means he didn’t eat from dinner (5pm) until almost 1pm when he woke up. While waiting for the sedation the hangry boy was walking around opening every door and bag we brought (we didn’t bring the food bag in). Every package the nurse opened (syringes and such) he would look at her with raised eyebrows….”what you got there?” We had food ready when he woke. He attached his brownie. All in all, he barely flinched getting the IV, he left the “hat” and “mitten” for the most part. His nursed laughed with us, “He is going to wonder why he woke up with all his winter gear.” He did itch his head and lose the gauze wrap at one point, but they got the cap back on and all was well.
Sleep was awful. One of the sleep meds he is on (the “stay asleep med”) is also a medicine used to help with seizures so he couldn’t take it. It was rough. We got him to sleep a little late. Then he woke because of the bright observation light he needed to have on so they doctor could see on the camera. It took us until almost 2am to get him to sleep. Alex and I were taking shifts. I woke at 2:45 and Alex had Nolan asleep but the observation light was off. I snuck over and slowly brought up the light as I was told to do and he woke up instantly. Nolan cried and screamed from 2:45 until almost 4. We finally got him to sleep at 4 and we said screw the light (and the nurse did too! She didn’t even date touch the light or even come in our room haha)
The doctor came in around 8 am to give us results. It was not really results we wanted. It was concluded he does NOT have LKS-the seizure disorder that happens during sleep and effects his language part of his brain. Honestly, that was what we were hoping for as it is treatable and could bring his language back. He has neuronal disturbances in the brain during sleep that could lead to seizures but isn’t considered seizures (they are 3 seconds or less). His current sleep meds will help prevent them from developing into seizures or maintain if he would have a seizure so we are upping that dose. It was also discovered that his left temporal lobe processes slower. Based on the fact Alex and I are right handed means that’s likely his language center is his left temporal lobe (who knew?!?) which is why he struggles talking/language. There isn’t anything we can do on the brain end of it, but speech therapy can help him “rewire” and make new connections from the info in his brain to his mouth. Basically picture construction in the language part of the brain…the info on one side and the mouth with language on the other. Just because there is construction doesn’t mean it cant come out it just need a detour. His brain needs to create those neurological connections to make new roads. Once he hits puberty, this is tougher, but not impossible.
Nolan will struggle with language his whole life. He will need to work hard. My mom gut tells me this is still totally possible. My baby boy can do the work and he can talk. He may never have the conventional conversation, but my hope is he could communicate hunger, needs, pain, wants, etc. I also want him to be able to read aloud to me. I don’t know why but it is something that I just really want to hear that little voice reading a page to me.
Our next step is to do an MRI to rule out past seizures, a tumor, or brain injury. Once we know his brain is healthy and there is nothing “unhealthy and treatable” in his brain we will know we have done our best to make sure he is happy and healthy and we will just work with him with speech therapy as well as alternative communication.
We love this kid so much. All of this has been hard and it has been sad. We love the child we have, we are not trying to change him–just make life as healthy and enjoyable as possible. We have really wanted to help him be happy and able to tell us what would make him happy is a big part of that. No matter the outcome of the tests, where his language grows, or what our future does or does not have in store for us, we will love this kid until the end of our days.