The next day, we were having a regular family day, outside, when Jacob had two more "episodes" like the ones back in July. He would freeze in place, look like he was staring into space, get quite pale with bluish lips, and his arms would be almost "locked" to his body, with a little bit of shaking. It would last about 20 seconds and then he would get very sleepy when he snapped out of it. After the second time, we called Dr. Robinson. He said he was going to call us anyway because he had spoken to a neurologist and they said that indeed they might be neurological & we should get some tests done. So he suggested I take him to UVM hospital ER and get him admitted that night.
We had to go by way of the ER, because that was the only way to get admitted if we hadn't come straight from the doctor's office. Unfortunately the ER in the largest city in Vermont is the worst place to be on a Saturday night. We waited in the waiting room (with at least 30-40 other people) for about 4 hours. For awhile Jacob was his usual happy, silly self, charming all the other patients waiting around. Of course, he got tired after awhile, even had another seizure (which I was able to catch on video this time) and then fell asleep (but not without a great amount of tears).
Finally Dr. Robinson made some calls & personally came to the ER to take me up to the room, which had actually been ready for me the entire time-- we just had to cut through red tape to get there. It was 10:30 by the time we got settled in, and of course nothing had been done yet other than regular vital sign checks. I "slept" on a ridiculously uncomfortable pull-out chair next to Jacob's gigantic "prison" crib. Of course nurses came and went every few hours to check on him. In a way I was thankful for them, because it kept me from being lonely, and I was able to get things I needed without having to leave Jacob in the room.
The next day began a string of doctors and nurses I'll probably never remember. The neurologist saw the video of the episode and said it did resemble a seizure. So Jacob got hooked up (after quite a bit of waiting-- which was the general theme of our entire visit) for a 24-hour EEG. It was a harrowing process, where he had to lay still for about 30 minutes while the tech. measured & drew on his head, then hooked 24 electrodes up all over his little head-- the glue was stinky and sticky and she had to use a cold puff of air to stick them on. I had to hold him still the entire time and he went from calm to crying every minute or so. I tried to occupy him with videos of kids' songs on my phone, which he never would sit still to watch, but that only lasted so long before he would get tired of being held down. Finally it was done and they wrapped him all up and left me to entertain a one-year-old attached to dozens of wires for a full 24 hours. (Which meant I had to stay a second night, which I hadn't really planned on, but thankfully I had enough clothes and could re-wear some.)
Almost minutes after the EEG was set up, he had a seizure. The tech was still in the room. So the neurologist was able to see it right away. He also had another pretty good one later around dinner time. It was an answer to prayers-- I wanted someone else to see what they were like!
Jacob was a real trooper. He hardly fussed much at all, in spite of not being able to do much attached to so many wires. He let me hold him a lot, even watched some cartoons. We put a mat out on the floor for him to play and he even laughed a little, acted like his usual self.
Because he did have seizure activity on the EEG, they wanted to also do an MRI. At first they told me it would be at 9am Monday (the day after the 2nd night). He wouldn't be able to eat anything for six hours before the MRI. So we waited & waited. They put the i.v. in him. 9am came and went, then it was nearly lunch time. He still couldn't eat, because if we were able to get the procedure, he couldn't have food in him. I was told later that it wasn't the MRI we were waiting on, but the anesthesiologist. And Dr. Robinson told me it was because he was fighting for me to have only the BEST pediatric anesthesiologist. He didn't want me to have just anyone-- because of Jacob's breathing history, he knew Jacob would need special care while he was under.
Even though he couldn't eat, he still wasn't grumpy. Just really sleepy. He slept on and off in my arms all morning, usually only 20 minutes at a time, then he'd wake up and play some, or watch TV with me. We still waited and didn't hear much from anyone. Finally, after lunch, they said it would have to be tomorrow. We'd have to stay another night. He was so happy he could eat again that he ate and ate and ate! And then they came to take the EEG equipment off, and we were even happier.
Once he had the EEG off and the i.v. was unhooked, we were able to explore the floor a little, and found a cool playroom with a ball pit which Jacob loved! It was great to hear him giggling and see him trying to walk around with a push toy. They had some great amenities on the floor, including a Ronald McDonald family room with free snacks & drinks, laundry & showers. All my meals were free while I was there anyway, and the nurses took really good care of both of us. Aside from the ridiculous ER experience, I was impressed by the rest of our care there.
Brett had been staying at home with the big kids while I was at the hospital-- there really wasn't any point in both of us being uncomfortable at the hospital, and the room was small. He did bring them to visit Sunday afternoon when he was all hooked up with his "turban" on. They were a little nervous, I think, but we assured them he was okay. The next night, Monday, we decided to trade places. Brett would stay with Jacob and I would go home to sleep in my own bed. "Sleep" being a loose term-- I still didn't get much sleep, even at home. Of course he couldn't eat again Tuesday morning because he really was going to get the MRI. So Brett found a stroller to take him on a walk.
I took the kids to our Classical Conversations "school" in Burlington Tuesday morning and left right after to get there in time for the MRI. A mom from school offered to take the big kids with her for the day so we could both be at the hospital. I was so grateful for her-- she fed them dinner, and even sent me home with a casserole & cookies that night when I picked them up! And we were able to focus on Jacob's procedure. They let me hold him on the stretcher all the way up to the MRI room. He fell asleep even before the medicine kicked in. He did so well, although the 2-hour wait seemed forever.. They ended up having to put a breathing tube in while he was under anesthesia because of his laryngomalecia, so it took a bit longer. As soon as he was awake, he was back to his usual antics, charming every doctor and nurse with his cheesy grin, jumping up and down in my arms trying to climb out of the bed.
Unfortunately, we had to wait some more. The doctor who interpreted the MRI did find "something" on the images, and needed someone else to help interpret what it was. That was all we knew when we found out we had to stay a fourth night before that other person could figure it out and come speak with us about it. Brett stayed again and I went home with the kids. Wednesday I packed a bag as I headed back yet again, the fourth trip to Burlington (it's about an hour and a half drive) in four days. I didn't think we'd have to stay again, but I wanted to be prepared. This time I was determined I wasn't going to go home without Jacob.
As soon as I arrived, a team of doctors had already assembled in our room to talk with us about the results. They took the three older kids to the playroom, where a volunteer was already waiting to watch them for us. The first doctor in the room introduced himself as an oncologist. I knew exactly what type of doctor that is, and my heart sank. There was also a neurosurgeon and a neurologist and a social worker, plus a couple nurses we'd come to know already through our stay. They showed us the images from his MRI, one revealing a white spot that clearly didn't look like it should be there. They explained he has a small, non-cancerous tumor in the left temporal portion of his brain, which is what has been causing the seizures.
The tumor right now is small and does not appear to be growing, or affecting his development. As long as it stays that way, it could be there forever. He will have to have regular MRI's to check it's growth, and he will have to take anti-seizure medication to prevent any further seizures. This officially gives him the title of epilepsy. (Anyone who has recurring seizures is considered epileptic.) We have no idea what this means for his future right now. Every doctor seemed quite positive in their outlook. I asked them many times if it can affect his development and they assured me the EEG showed a completely normal 1-year-old brain, except in the places he had the seizures. There are many people who have lived with tumors like these their whole lives.
Two websites recommended by our doctors:
He has "complex focal seizures" as described on this website (although he doesn't lose consciousness like it describes).
Helpful Guide for Family & Caregivers
He will take the medication 2x a day, and if he is seizure-free for a year, they will consider taking him off of it. We will always have to carry around his emergency seizure medication to be administered every time he has a seizure over 5 minutes (which has never happened, and likely won't...) He will meet every 6-12 weeks with our team: a neurologist, neurosurgeon, and an oncologist to determine the next step. Right now we are praying that the medication continues to control the seizures and that he can grow and develop like a perfectly normal little boy.
We know we serve an amazing God (who already showed himself faithful through all the many people who instantly began praying for Jacob & searching for ways to serve us this past week) who can do miracles. We know He is greater than science, and we could have another EEG in a year that shows the tumor has disappeared. We are optimistic for the future of our special little boy, and though there are still so many questions, I don't have to have them answered now. I will just hold Jacob a little closer and remember that God is always in control.
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