|Before EEG hook up|
Grandma Poucher called me this afternoon to ask me how Jacob was doing and if we had the results from his Video EEG yet. I realized I needed to finish my blog post that I started last week about our recent overnight stay at Shands. Thank you for calling and checking on Jacob, Grandma!
When I started to write this post last Thursday I was so happy to be able to write that Jacob doesn't have to go back to Shands for two weeks!! Now, it’s a week away, but I am still thankful Jacob is getting a little break from the hospital and doctors.
Two weeks ago I spoke with both Dr. Asthagiri (NIH neurosurgeon) and Dr. Andrade (Shands peds neurologist) about Jacob having more moments of mumbling and not finishing his sentences and looking spaced out. Both doctors suggested Jacob have a three to five day in-patient Video EEG at Shands Hospital. The scheduling nurse called me on Wednesday, two weeks ago today and informed me that there were not any openings until July. So we scheduled Jacob for July 5th and his name was put on a waiting list; if a cancellation came up they would call us. Thursday evening, April 28th, I got a call that a bed was open for Jacob for Friday morning. Really short notice, I know, but I was relieved that Jacob was going to have the VEEG done and we were going to get it over with. I was happy also that two of the days would be over the weekend and TD would be off work and able to care for Gavin. So we packed up and headed to Gainesville Friday at 6:30 am. The thirty minutes I over-slept made a huge difference on I-10. The sun blasted Gavin before we could get onto I-75 and he was not a happy passenger. Not to mention he was still feeling like crap from the MMR vaccination the week before. Jacob and I, with Gavin and our overnight bags in tow, checked in at admissions, caught 15 minutes of the royal wedding rewinds and were sent up to a room on the fourth floor in Shands Hospital Pediatrics by 9:00 am. We were greeted by housekeeping, Jacob's RN for the day and Child Life. The hospital room was intimidating. Since patients are taken off their seizure medications while being studied, the bed rails are heavily padded and there are step by step instructions on how to best handle a patient having a seizure posted behind the bed. There was a globe on the ceiling to the left side of the room where a camera and mic were installed to record and watch Jacob at all times. I was informed I was not to leave Jacob without asking someone to sit with him in my place. Jacob, Gavin and I spent the next five hours hanging out in this very small room. Child Life brought several items to Jacob's room to entertain Jacob and Gavin, including a Nerf basketball set, Bionicals, Connect four, toy dinosaurs and mega blocks. Jacob brought his Xbox game system from home to play with and was given an unopened K'nex octopus to put together. I thought it was a bit ridiculous that we waited five hours for Jacob to be hooked up to the VEEG, especially since Dr. Andrade and the resident had come in around 10:00 am and put all the orders in. The next few hours (well, really the entire weekend) went by very slow. We played, talked and watched TV. Finally at noon the EEG tech team came in to hook Jacob up. It took two long hours. I was very proud of Jacob for sitting so still and patient while they marked, scrubbed and glued probes to his head. They did a test read and after re-doing several of Jacob's leads they wrapped his head with gauze, taped it down and covered the long wires with a gauze-like sock connected to a small machine in a pouch with a long strap for him to put over his shoulder and carry around. Even though it all seemed portable, Jacob was still connected to a long power cord attached to the wall electrical plug. Before the tech left he showed me the "panic" button for me to push if Jacob had any unusual behavior or if he had a seizure.
I was happy and sad to see TD and Brie come in that evening around 10:00 pm. I was happy they had made it to Gainesville safely, but TD had come to scoop up Gavin for the next few days and I was upset about being away from him for so long. Until that weekend I had only spent one night away from Gavin in his two years and it was because I was in the hospital and unable to be at home with him. I was crushed about not being able to be everywhere I wanted to be for all three of my children. TD had offered to spend the weekend at the hospital with Jacob, but I decided I would worry much more about Jacob at the hospital than Gavin with TD and Brie and family in St. Pete. Jacob did invite his dad on Thursday night to come and spend the weekend with him after I checked him in and answered all of the medical questions. Jacob was crushed that even though it was his dad's weekend to spend with him, he declined coming to the hospital. Jacob and I were also very sad because we had to miss Brie's Art show, but I am so proud of her. She took third place for both of the beautiful pieces she chose to enter in the show. TD took a lot of nice pictures so I was still able to share in the experience, only from a distance. TD and Brie shared with us the details of the show and who showed up to support her (thank you Nana, Papa and GG Grimes) and what they had for dinner. Then they left. Gavin was so sick of being in the hospital room and I had been telling him all day that daddy and sissy were coming to rescue him. He was ready to jet as soon as he saw them. At this point I was exhausted, but since Jacob had done very little all day and slept all the way to Gainesville, he wasn't tired so we stayed up and watched movies. I can't remember which night we watched which movies but Jacob got to see White Men Can't Jump for the first time and Con Air (twice) all the way through for the first time. We watched some hilarious (but crude) Comedy Central stand up. Dennis Leary, I love you, but you are so foul! We also watched Major League and no cartoons for once in a long time. I slept like crap Friday night. The peds floor is very loud. Constant machines beeping and there was a lot of commotion around one of Jacob's neighbors room through out the night. I think the young boy was having active clinical seizures. The nurses came in often to check vitals and ask us how Jacob was doing and we had to have a light on all night to make it easier to video record. He slept most of the night facing away from the camera though. The nutrition staff brought in breakfast at 7:00 am both mornings. No matter what time Jacob and I go to bed, we are not early morning people so we went back to sleep in hopes to get a few consecutive hours of sleep. No such luck. At 9:00 am Saturday morning I was awakened by the voice from above asking me to check on Jacob. I was wondering if something was wrong or if they were just having a staff change. Jacob seemed fine to me and woke right up. The tech came back over the speaker and told Jacob he could go back to sleep. Yeah right. All done sleeping. After breakfast, coffee and a little over an hour of working on Boy Scout assignments, Jacob and I spent the day playing games and piddling. I worked for many, many hours building Jacob's K'nex motorized octopus (and I do mean MANY HOURS!). I was determined to finish it for Jacob, and I did, much later in the day! I couldn't wait to get batteries in it and see if I had put it together right. I bet it was very humorous for the EEG techs to watch me trying to figure out the directions, put pieces together and then take them apart, trying to get the thing together straight. I was very proud when I was done. I thought the feeling of accomplishment I felt must be similar to how TD felt the week before, finishing Gavin's play set (only mine was on a much smaller scale!). After all, the octopus started off as 550 pieces and the play set was in a gazillion pieces. Oh, and Jacob really liked his techs! A big black guy sat with him and compared Zig Tech shoes and the woman tech had a sister that lives in Tallahassee. They were all super nice (maybe because they’re being filmed… I don’t know). One of them even remembered us from September 2009 when Jacob has his craniotomy! Anyways… Dr. Andrade didn't come in until 2:00 Saturday afternoon. I informed him that Jacob had not had any of his spells since we had been in the hospital. He talked to us about the readings from the last 24 hours. He said the EEG read a lot of misfiring and brain activity that leads up to seizures, but no clinical seizures, except for the one instance that morning. The voice in the sky had asked me to wake Jacob up because the EEG showed he was having a seizure. It only lasted for 20 seconds though. Dr. Andrade said Jacob's misfiring and abnormal brain activity is worse at night when he is sleeping. I found that very scary and starting wondering how we’ll be able to watch over him while he is sleeping and we are sleeping? Is there a machine I can hook him up to or a companion dog that detects seizures? Dr. Andrade said he would return Sunday afternoon and that Jacob may be able to go home then given that they were successful in recording the seizure activity.
So Saturday afternoon and evening went about the same as Friday had gone. Jacob and I did play bingo… and won! That was fun. They brought around cards with markers and everyone opened their doors and listened to the loud speaker as other kids and staff called out the numbers and letters. It was fun to yell bingo at the top of our lungs. They brought in the prize cart and Jacob asked the nurse to please give his prize to one of the other children, that he didn't need anything and he knows he’s older and that prizes are fun for the younger kids. We sat with our door open for a while that evening. Not being able to leave the room was hard. Everytime Jacob got up to use the restroom he would go to the window and look out for a bit. It seemed like we had been there for weeks, not days. Listening to and watching the kids coming by the door in the wagons or in the push cars was sweet and sad all in the same emotion. These kids were laughing and singing, but still so sick. The child that broke my heart the most was a little girl who couldn't have been more than seven years old and her entire left side of her face had been taken over by a tumor. As she peered in our room when she walked by with her mom slowly. I had to smile through the tears that were about to burst out of my eyes. I was glad Jacob didn't see her, his heart would’ve hurt too. The night was full of more TV and video games and Jacob took a bird bath, brushed his teeth and changed his clothes. He brought several button down shirts. Once again, Saturday night I was exhausted. Not from any activity, but just from lack of sleep. Unless you count being a slave activity... just kidding. Sort of. I fell asleep while watching TV with Jacob. The chair that they give guests to sleep in sucks, but at that point I could’ve slept standing up. Jacob stayed up late again, until around 3:00 am, and I know he watched Con Air for a second time and the movie Deep Blue. I woke up several times to ask him if he needed to go to the restroom or needed a drink or whatever and he was very entranced by the movies. Around 4:00 am the PCA came in to check on Jacob and he was finally sleeping well. Soon after that it seemed it was time to get up. I was anxious to hear how Jacob's EEG had looked while he was sleeping Saturday night and wondered if we were going home. I can admit that I was very grumpy Sunday morning and completely put out because the coffee shop was closed on Sunday, though I was extremely happy to see my mom and dad who made the trip to Gainesville to see Jacob and me for the day. Thank you for making our day so much better!! Jacob hadn't had any spells of loss of speech or anything like what Brie and I witnessed at home recently while we were at the hospital. I couldn't help but think it was because he wasn't doing anything. He was sleeping when he wanted, eating meals like clock work and snacks like ice cream and animal crackers all day. He wasn't dehydrated. The nurses brought him new Gatorades every hour. His physical activity was limited. I thought they would sleep-deprive him or induce hyperventilation or something, but they didn't.
I guess by noon on Sunday they had all the info they needed because Jacob was told he would be released. Dr. Andrade spent a long time talking with us. He tried to explain to me why Jacob's misfiring is more active at night and he did his best to explain to me how seizure medications work. He changed Jacob's seizure medications from Trileptal to Tegratol. Jacob has been on the Trileptal for at least eight years and he could have built up a resistance to it. Dr. Andrade said that a lot of the abnormal misfiring in Jacob's brain is coming from the right frontal lobe area, but Jacob also has abnormal activity originating from the center left. He said the misfiring can cause the speech delays and mumbling and other odd behaviors. He said Jacob could have a hard time retaining and remembering things and it could make learning considerably difficult. Dr. Andrade gave me Jacob's new prescription and a lab sheet to have his liver function checked in a few weeks and said we could go home. Two hours later, the EEG techs came in and unhooked Jacob. He took a shower and we were free. Daddy and Mama stayed with us the entire time and made sure we got on our way safely (TD and Sally were having differences of opinions on Friday night!). After a stop at Starbucks, Jacob and I rode home with the windows down, mostly in silence (other than the “woohoos” after getting on I-75). We were pretty much out of woods! I love to spend time with Jacob and I am glad I was there with him, but I need to be outside daily and I missed Brie, Gavin and TD. I was very happy to be headed home. So we said goodbye to Shands for a few days. Jacob was scheduled to return on Wednesday for his infusion.
TD, Brie and Gavin had a great time in St. Pete and Gavin survived just fine with out me. They celebrated Presley's 2nd birthday, went to the beach and spent time with family.
I am curious to hear what Dr. Asthagiri (NIH) thinks about the VEEG findings. We were also told the brain activity they recorded over the weekend was commonly seen in NF2 patients. So the bottom line is - Jacob is having a lot of brain activity that leads to seizures, but not the seizure. Jacob is at risk of having clinical seizures. Jacob's medicine has been changed and since we have been home I have not witnessed any odd spells. Jacob will continue his Avastin treatments every other week. He has an MRI in June, an Eye appt in June, an Audiogram and ABR testing in June and will return to see Dr. Andrade the first week in July. Jacob will return to NIH for MRIs and doctors appointments in August. I am looking into having him tested for low blood sugar. It seems sometimes that his tremors could be related to lack of food. Jacob and I had his IEP meeting this week for high school, so we are getting ready for that transition. And on a side note, I think it’s terrible that the government has gone so far with cuts that Jacob will not be able to see a vision teacher in Leon County but once a month. Thank you, Rick! Back to summer plans… There are summer camps the kids are looking forward to and lots of fun activities (swimming lessons, lifeguard classes and some fishing, I’m sure!). We are all happy to have a break from school for a few months! I love the summers with my kids!
I hope that when TD edits this blog post he will write about Jacob's fourth Avastin treatment he took us to last week. Having him with us was so nice. It was fun to have him there and to watch him and Jacob nit pick about how to play video games and both get excited about what's for lunch is too cute? We all think we have jokes, but having all three boys together is always entertaining and an adventure.
|The K'nex octopus worked when we got it|
home and TD put batteries in it!!!