Aug 15, 2016 Latest post:
Sep 14, 2016
Let's start at the very beginning.....July 14, 2016: Elise had been experiencing a major migraine for over week. She had been in Oregon the entire week before on tour with the Allegro Choirs she was a member of and battling a headache then as well. She was also in rehearsals the whole week for the Music Man and although feeling sick she was trying her hardest to continue to rehearse. On Wednesday, I had taken her to the pediatrician who felt that Elise had a simple virus and she would feel better soon. On Thursday, July 14, just before we left to go to rehearsals for Music Man she began to have major vision problems. She lost her balance and became disoriented. She vomited and was extremely light sensitive. I realized that this was not a simple virus and rushed her to Children's Mercy Kansas. Within an hour of being there she had a CT Scan and radiology saw that there was an obstruction of some sort blocking the flow of spinal fluid and causing Hydrocephalus. The Critical Care team ambulanced her to Childrens Mercy Hospital downtown, where they would be able to take better care of her. When I got downtown the neurosurgeon showed me the scan and said it was a tumor, although we didn't know what type at that point. July 15, 2016: Elise underwent an MRI where she was sedated and then intubated in preparation for brain surgery later that day. The MRI showed what they believed to be a cystic mass on the pineal gland, know as a Pineal Gland Cyst. The neurosurgeon was so happy because this was literally the best possible outcome. They took her into surgery around 5pm and were done about 3 hours later. Cyst gone. Everything beautiful. No long term problems....wonderful....beautiful...fantastic.....and they sent us home the next day.In the weeks that followed Elise had a beautiful experience with her Music Man cast. She went to the pool with her friends (although she isn't allowed to actually swim she enjoyed just being with them). She cleaned her room. She had a follow up appointment and she was doing great. She had a vision exam and she passed with flying colors. She went school supply shopping and was trying so hard to get back to normal life all the while feeling like something was a little off.....August 12, 2016: Elise was trying to read a book and she was having a really difficult time focusing. One line appeared to hover over the other. She was having double and blurry vision. She mentioned it to me but I thought maybe she was tired. She didn't seem to have a headache or any other symptoms so I kind of blew it off.August 13, 2016: Elise woke up and her pupils were extremely dilated. John checked her eyes and they reacted sluggishly. I was concerned but with no other symptoms I decided to just watch her throughout the day. That evening after I had put all the littles to bed, the big kids were watching a movie and Elise began to complain about her vision again. She was kind of upset because it was blurry and she wasn't feeling great and she had a little bit of a headache. I didn't want to be a panicky mom that overreacts about everything but it was obvious there was something going on. John suggested we take her to ER just to get checked out on the off chance it was something that needed attention. We decided to go to Olathe Med since it's about 5 min from my house. They did another CT scan there and found some new areas of concern. After discussing this with the neurosurgeon at Children's Mercy the decision was made to transfer her to Children's Mercy Downtown for further testing. August 14, 2016: An MRI was ordered and showed some area of concern. There is some new bleeding in the brain and also hydrocephalus. It's obvious that the cyst wasn't the main issue, there is some other underlying cause. But what? We don't know. There are several things it could be but the neurosurgeon won't know until he gets in there. So that bring us to now....I'll update this page as I get more information. We're just hanging out at Children's Mercy trying to make this room a home for the time being. Thank you all for your continued prayers.