This post probably has way too much detail for most people, but it is more for us to remember what happened this past week than anything...
We have spent the majority of the past week at Primary Children's Hospital in Salt Lake with Riley. Last Thursday (the 7th of April) Riley came home from school complaining of a stomach ache. That night I let her sleep on the floor in our room, mainly because I didn't want to clean up puke off of her top bunk should she get sick in the middle of the night. At 2:30 a.m. I woke up to choking nosies on the floor...I jumped up and grabbed the bowl because I thought she was throwing up. She wasn't throwing up...she was choking on her saliva and we couldn't wake her up. I yelled at Cory to turn on the light and when neither one of us could get her to wake up we ended up calling 911. The EMTs came, but by the time they showed up she was responsive and just wanted to go back to sleep. They left with the recommendation that we take her to her pediatrician the next day if she wasn't acting like herself. Cory and I were awake the rest of the night just listening to make sure whatever it was that happened didn't happen again without us knowing it.
I did take her to her Dr. the next day, and he said that without seeing exactly what had happened the night before he couldn't tell us if she had had a seizure or not. There was no way we were going to put her in her own bed on Friday night, so she was on the floor again in our room. That night before Cory and I went to bed we decided that if the same thing happened again we were not going to wait for the ambulance to get to the house...it would be much faster for Cory to throw her in the car and take her to the emergency room of the hospital just down the street. At 4:30 a.m. I woke up to the same choking noise I had heard the night before. This time there was no doubt that Riley was having a seizure. She was shaking and her eyes were rolled up her her head...it was awful to see. We waited until she quit convulsing and then Cory took her to the ER in his car while I called for my parents to come over and sit with Bailey so I could get to the hospital, too.
Once at the hospital Riley had another smaller seizure, and they decided to transport her by ambulance to Primary Children's in Salt Lake. I rode in the ambulance with her and Cory followed in the car. We were admitted and that is when all of the testing started. Riley was hooked up to an EEG and then later in the day went in for an MRI. Right before the MRI she had another bad seizure...I was trying to put a small catheter in her earring holes to keep them from closing up while in the MRI (she had to take her earrings out) when she fell over in her bed and started convulsing. It was terrible! Cory scooped her up and he and nurses took her to a different room and got her on oxygen. They were able to stabilize her long enough to get her MRI done, which thankfully came out clean.
The doctors ended up putting Riley on some anti-seizure medication, and we were released from the hospital Sunday afternoon. We were all so glad to get home! Riley was tired but was doing okay Sunday afternoon until about 5:00 p.m. when she had another seizure while we were at Mimi and Papa's house for dinner. She was playing air hockey with her cousin when she just totally checked out...no convulsing this time, but her eyes went blank and she was unresponsive. It lasted about 3 minutes and then she went to sleep for about 15 minutes. After she woke up from her nap she seemed okay...just kind of tired.
The next day (Monday) Cory stayed home from work...it was a good thing he did, too. Riley started having more of the "blank-out" seizures as soon as she got up from bed. She would seize, fall asleep for about 40 minutes, wake up for about 10 minutes (she was really confused and had no idea what was going on) before she would have another seizure. After two of these cycles we called her pediatrician and they said bring her right in. We did, and he contacted her neurologist at Primary Children's. The neurologist wanted her back up at the hospital so we ran home really quick, grabbed a bag of stuff we though we would need, and headed back up to the hospital. They admitted Riley again, and got her hooked up to another EEG. Throughout the day she had between 10-15 seizures. The poor kid was completely wiped out from them and slept the majority of the day. We ended up being in the hospital again until Wednesday afternoon, when we went home. The doctors still had not found a concrete reason why her seizures were happening, which according to them is not super uncommon. They upped the dosage of her anti-seizure medication, added a second medication, and we went home.
Riley continued to have her "blank-out" seizures periodically Wednesday night and had more on Thursday. So many, in fact, that I called up to Primary's and spoke to the on-call neurologist. He had us give her a "rescue medication" we were sent home with, which totally knocks the poor kid out, but stopped her seizures. Cory and I were very frustrated...apparently with most kids, they are given medication and the seizures are controlled almost immediately. The doctors were kind of stumped as to why Riley wasn't responding to the medications like they had hoped she would.
Friday we had a follow-up appointment with her neurologist in SLC...Riley was still having her blank-0ut seizures and was really confused about just about everything when she wasn't seizing. She couldn't remember anything, which was pretty scary for her mom and dad. At the follow-up appointment her doctor recommended doing a spinal tap on her to see if her seizures were being caused by some kind infection. Cory and I weren't too excited about this, but went ahead and scheduled one to be done as an outpatient procedure up at the hospital. The doctor again upped her anti-seizure medication with the hopes that we just hadn't found the dosage that would work for Ry yet. Cory and I were really struggling to remain optimistic on Friday night. One second we felt like things would work themselves out, and the next we were thinking about what we would do if they could never get her seizures under control.
Saturday Riley had her spinal tap, which she endured like a champ! Thankfully they put her to sleep for the procedure, and she really has no idea what they did to her (because we didn't tell her!). We just told her her that they were going to do a quick test on her back while she took a nap. We haven't gotten the spinal results back yet, but hope to by tomorrow (Monday).
The last two days, since upping her medication again, Riley has been doing a little better. She hasn't had any seizures (that we know of for sure) since Friday evening. She is remembering more and though her thought process is still a little slow, she is doing better. We still have a ways to go before we feel like she is back to normal, but the fact that she hasn't had any seizures in nearly two days is encouraging.
Thanks to everyone who has been thinking of us, called, brought meals, brought little gifts for Riley, etc. We appreciate it!
Here are a few pictures from our first stay in the hospital...this is the only time I had my camera with me...
