Old Blog Seizure Post #1: Posted 2/12/08
About two weeks ago Nadezhda had a seizure and had to get rushed to the ER. She seized for approximately 1 hour and 45 minutes. By the time she was finished seizing she had so much medication in her system that she began to have trouble breathing. She was intabated and put on a ventilator. Right after they did the intabation they also did a spinal tap to check for meningitis which came back just fine. The doctors decided that Primary Children's would be a good place for her to be checked out. We had to wait in the ER with our little girl laying on the bed with all sorts of plugs and tubes helping to sustain her life.
Now, I know a lot of people have had it a lot worse, but this was the hardest day of my life so far.
We waited for the life flight crew for about 4 hours. They were already in the air on another call and had to return to SLC to refuel before coming up. They walked into the ER like a fully clothed Baywatch crew. They seriously were so awesome. They prepared for the flight including extabating her and then seeing how she did breathing on her own. Once they felt she was doing fine on her own they loaded her on to a gurney thing and took us out to an ambulance. The ambulance, whose driver is a friend of mine, took us out to the airport and dropped us of at the plane. They loaded us on this tiny plane and took us to Salt Lake City, UT.
I had to say goodbye to the Flight Crew after they took us by ambulance to Primary Children's. They gave me hugs goodbye. How amazing are these people. I love them.
We were admitted to the ER at Primary Childrens. All their staff looked so different than I imagined a Childrens hospital's staff to look- tatoos, piercings, very young - even the Doc. And even though I didn't expect them to look so young and "hip" they were just the type of personalities I knew would be there. They were all kind and loving and very smart. Nadezhda especially loved this young male nurse with lots of tatoos and long hair and a beard. She kept grabbing it and he kept cooing at her. It was so cute.
Later that night they actually admitted us into the hospital. We went into the Neuro / Trauma unit. We met several doctors and nurses who took great care of us. They took her vitals ever four hours and checked on us even more than that. Plus they ran tests. They started the tests the next morning. They did an EEG - brain wave checker, and blood tests. They all looked great. They did an MRI later in the day. It was fine too. They even did a poo test to see if she had Rotavirus, but she was fine.
Many of her doctors were residents and were so helpful and so smart. Her Neurological doctors were great too, they would come in as a team with their head doctor accompanying them. They told us that the main reason they felt she needed to be in Primary Children's and in the Neuro/Trauma unit is because her seizure started on just one side of her body and because it was unusually long.
On Friday they determined that it was just a febrile seizure, which is a seizure caused by a fever. They still aren't sure what caused it, a bacteria or viral infection, but it must have been something to give her a fever. Maybe it was just teething - seriously. She did have a small tooth on Thursday - the day after the seizure. Crazy though.
Well on Friday, she was taking a nap and Diane, my sweet sister who spent the whole hospital stay with us, saw her hand shaking. She told me and I looked then ran to get the doctor. By the time Dr. Simmon got there, she wasn't shaking any more. She could have just been twitching in her sleep, but I felt pretty scared after that and the doctor agreed to keep us one more day to keep an eye on Nadezhda.
Saturday afternoon rolled around and we were able to be discharged. I got home late Sunday night. My in-laws dropped me off at home because Curtis stayed in SLC. He had to fly out on Tuesday morning for an interview in Kentucky for dental school so we figured he would just stay. It was scary to be home by myself, but I knew that I had my sister "upstairs and to the right" and one of my best friends who is a nurse just next door, so I had enough support.
Also, at the hospital in SLC, they taught us about seizures and what to do next time she has one. Also, they gave us a rescue medication we are supposed to use if she has one more that 3-5 minutes long. Actually we are part of a study, so if she does have one again, we are supposed to fill out a postcard and mail it to the seizure medication study people. Hopefully though, it never happens again. This was a really scary experience for us. We love our little girl and are so glad she is ok.
Old Blog Seizure Post #2: Posted 5/23/08
After our long road trip vacation, we drove to Springville to stay again with Doug and Heather. We told them to plan on us for Sunday and then called a few days later and asked if we could come Saturday night instead. They were so cool to just let us come any ol' time, and let us have pizza and movie night with the family. While everyone was down stairs watching the movie, Curtis and I took Nadya upstairs to get her ready for bed. I think this was one of my favorite moments of the vacation. We all just laid there in our room and Nadya crawled around and gave us hugs and kisses and was so cute and we all snuggled. It was a good moment. She went to bed easliy and we went down and hung out with the Bensons. Later, we went to bed.
The next morning we woke up to Nadya having another seizure. We gave her the rescue medication which really did nothing. The ambulance took us to Utah Valley hospital and once her seizure was stopped, they transported us to Primary Children's Hospital.This time we stayed in the Infant Unit. The doctors ran a few more tests and put Nadezhda on an anti-convulsant medication and sent us on our way a couple days later. Doug and Heather brought us treats and a delicious Sunday dinner and their whole family for a visit. Thanks you guys. The doctors still don't really know what is going on with Nadya, but she is fine other than the fact that she has seizures now and again. So Monday, while Nadezhda was all doped up on her new drug, we drove home in one long shot and she didn't wake up at all - more that just stirring anyway. And that was the end of our mostly fun vacation.
Old Blog Seizure Post #3: Posted 5/25/08
Nadya had another seizure. We have no idea why these happen still, but they do. This one was on this past Wednesday - one month and one day after her last one. It lasted about 50 minutes or so. The ER Doctor consulted with her pediatrician and the Neurologist we have down at Primary's and they decided to add another pill to her daily dosage. So now she takes 3 pills each day. They did a test of her medication level and found that it was too low. It was at a 10 but was supposed to be between 15 and 40 to be able to prevent seizures. Now it should be ok. We will find out though when we go to Primary's this Thursday. They are also going to test her dose levels in her blood too make sure they are high enough and they will also run an EEG scan of the brain to be sure there is no seizure activity going on. While in the ER on Wednesday, they ran another CAT Scan and it was fine. The Doctors will figure out what they can do for her. They may have already done what they can, I suppose - by raising her med dose. We've got great doctors. Anyway, she is really back to normal as far as I can tell.
Old Blog Seizure Post #4: Posted 5/30/08
On Tuesday Nadezhda had another seizure. Ahhh. This one was a little different though. It only lasted 15 minutes and stopped before the paramedics even took her into the ambulance. That was kind of exciting. She recovered really quickly from it. The strange thing was that when they tested her med level in her blood, it was at a therapeutic level that probably should have prevented seizures. Another piece of the puzzle...
On Thursday we took her to Primary Children's for a follow appointment. This was already scheduled before these last two seizures happened. They just wanted to check her out and test her med. levels and to make sure all was ok. It was a productive appointment. They are starting to form some hypotheses. We know just a little about what is going on, and when we know more I will definitely journal it on my blog.
I know that seizures, doctors, and hospitals are what fill up my blog, but they are also a good chunk of my life right now too. We have some really amazing doctors helping us out and taking a lot of time talking with us and explaining all this craziness in a way we understand. Man, we are lucky in a lot of ways.
Old Blog Seizure Post #5: Posted 7/03/08
Yesterday, Nadezhda had another seizure. This time was a little different. Curtis was home with her and stayed so calm. He can really handle himself in hard situations. Nadya is fine now. We are still in the hospital. We stayed overnight so they could monitor her because she had so many drugs that it could have gotten scary. It's been fine though. All is well. Our pediatricians have been great about talking with our Neurologist, whom we love. Oh, we got to share a slightly bigger and much more comfortable bed that usual last night!
Old Blog Seizure Post #6: Posted 8/29/08
Seizure 6 was on Wednesday Aug. 27, 08. Probably caused by another virus. Really lame, but we are kind of used to this now.
