On our way home is where everything changed. Kinley got pretty worked up at the doctors and crashed when we were driving home. Me and Caleb decided to stop at a little restaurant for take out before we got home. When we walked in, and while we were paying for our food, Kinley had just started to wake up. She seemed different than her usual self. After we payed, we sat down to wait while it was being cooked. Kinley still just had a weird look to herself. Out of no where, her eyes rolled back, and she began to seize right in front of me and Caleb. She was still in her car seat. I told Caleb to record it. He pulled his phone out and started recording. We both just sat there, helpless, freaking out on the inside since we were in a public place, and watched our baby girl seize. It was her worst one yet and it was horrible to watch. The shaking, the twitching, the noises made, the trying to cry while seizing but couldn't, probably will forever be engraved in my head. I just rubbed her shaking leg, told her everything will be ok, mama's here. Whether or not she could hear me, that's all I knew I could do in that moment. The time was getting up there again. Just over 2 minutes long, she finally stops and cries. I immediately take her out of her seat and just hold her. My body is weak, shakey, terrified, and nauseous because of what I just witnessed. I began to cry and the employee tells us our food is ready. We grab the food and head home. It was a silent car ride. I knew right then that we were NOT going to see this Idaho Falls doctor. I wanted my baby to be seen by the best there is. And I want her seen now. This was my baby here. This couldn't be happening. Why us? Why her? I started getting angry. We waited years to meet this baby and now God is throwing this at us? Hadn't we had enough? We got home and Kinley had fallen right back to sleep after her seizure. I just held her and sort of ate. I didn't really have much of an appetite. After I ate, I sat down on our recliner and debated whether to wake her so she could eat since it had been a little bit. I held off and tried to make an appointment at Primary Children's hospital so she could be seen. I couldn't get through to them both times that I called, so I left a message in hopes of them returning my phone call. I also had calmed down some and decided to call the Idaho Falls neurologist to see if she could be seen ANY sooner than her appointment which was on the 21st. The lady I talked to was very rude and said there was no spots available and didn't seem to care or have an ounce of sympathy for my baby. Once I said told her "ok, I am not just going to NOT have my baby seen so I will just take her to Primary's" she instantly said "oh wait, you know what? It looks like I do have an opening this week." Bull crap lady. You just argued with me for 5 minutes saying she couldn't be seen. Keep your appointment. I'm not going there. I hung up on her because she made me mad. I sat down and decided to wake up Kinley to eat. Caleb was by me. When she woke up, the exact thing I just saw an hour ago was repeating itself. I knew she was going to seize. I could see it in her eyes. I told Caleb to once again record it. He pulled his phone out and sure enough, her eyes rolled back, and she again began to seize. This time right in my arms. I rolled her to her side and we again sat there helpless and waited for it to pass. 2 minutes again and it's over. I put her on my chest and begin to sob. What is going on? We need to see someone now. What do we do? Where do we go? This cannot be happening. 2 in an hour? I called the pediatrician and asked if we should take her in. He said "yeah if she keeps it up." Me and Caleb pull up the video of the seizure she had an hour ago just so we could really pay attention as to what exactly she is doing. I once again started to cry while watching because it honestly was just horrible to watch. I tried to pay attention to certain details she did so I knew what to tell doctors. Right after the chaos, I am receiving phone calls asking how her doctors appointment went. My mom was one who had called. I cried to her telling her she had just had 2 in an hour and that we were thinking about taking her in. She said she would call me back after she talked to dad about what he thought. While we waited, Caleb told me he wanted to give her and me a blessing. In that moment, I appreciated my husband so much. I appreciated that he holds the priesthood. I appreciated that he was aware of what we both may need. He gave Kinley's first. I cried through hers as I listened to the blessing she received. He then gave me mine, and I cried through mine as I listened to the blessing gave to me. The spirit was there. It was strong, and I also just felt at peace that we would get this figured out. It was now game time. I was over feeling sorry for myself. I was ready to get the help we need and to stay strong for my baby. My mom called back and said her and dad were gonna stop by. When they came in, we made a game plan. Since I couldn't get through to Primary's and they hadn't yet returned my call, and because the fruitcake receptionist wouldn't squeeze me in to be seen in Idaho Falls, we decided to head down to Primary's that night and to just take Kinley to the E.R. We knew she'd be seen that night and that's what we felt was best and that that's what we should do. Mom and dad left. Caleb left to take Libbie to his parents so they could watch her. I began to pack my bags. I was already exhausted. Everything from the lack of sleep for the past weeks, the emotional roller coaster of what was going on, the nausea from everything, and the crying that leaves you with a headache and exhausted. But, this wasn't about me. I had to somehow, somewhere, put aside the fact that I wanted to throw up and muster up the energy to drive 4 hours away and get the help needed for my baby.
It ended up being me, Caleb, and my mom that headed down. We left at 8 that night. I secretly was hoping someone could drive for the first stretch until Kinley needed fed so that I could hopefully get a little sleep, but, both my mom and Caleb have intense anxiety about driving that fast, and traffic and what not. They both offered to drive, but, no offense to either, I wanted to get there sooner rather than later. They both sometimes drive under the speed limit. haha. I have no problem with it so I drove. I had my mom sit in the back so she could watch Kinley. We made it just past Shelley when Kinley starts to wake up from a nap. My mom said, "uh Shalei, she's...yep, she's seizing." I had her record it as well. I try to stay calm as I am driving 85 mph, and had Caleb and my mom pay attention to Kinley. I could here her seize. It was dark, my eyes were on the road, yet I can here her noises and her seizing. After 2 minutes, it stops again. My goodness. 3 seizures within 6 hours. I'm so glad we are on our way down there, yet we all were nervous. We were praying that she wouldn't seize until we got there at least. Especially because we knew most the drive was desert and we'd be in the middle of no where. It kind of doesn't settle well. We stopped once to feed Kinley and get gas, but we did make it up to Primary's at around 11:30 that night. We got into the emergency room and checked in.
Day 2. They checked us in, got some paperwork done, bracelet made, and then we waited. I ate a granola bar since I was starving. It wasn't too long of a wait and they called us back. They took her weight, temp (she hated that since it was rectal), blood pressure, all that, and then took us to a room. By this time it was probably 12;30 a.m. We all had the tired look on our face. After seeing a couple doctors there, they said they'd admit us, but that because it was still flu season, that only 2 adults could be in the room. It was 2:30 by this time. When they said that, I was mad. My mom said she'd just go get a hotel. No. I had her come with for a reason. I was not about to send my mom out by herself in the middle of the night in a huge city all of us are unfamiliar with to go find a hotel. Not happening. Caleb offered to sleep in the car and give me and my mom the room. Morning was in like 4.5 hours anyways and by then, 3 people could sort of be in the room. So that's what we did. They got us admitted and into a room. Caleb went out to the car to sleep. Me and mom shared this tiny little bed and Kinley was in the crib. I couldn't sleep. I was so scared for Kinley. I was on edge wondering when she would seize next. I couldn't see her from my bed so it was just a LONG night. I chose to hold her and try to sleep in the chair since I wasn't sleeping in the bed and I maybe dozed for a half hour. She was asleep so I chose to lay her down and attempt the bed again. I got maybe another 45 minutes before I woke up to nurses coming in to check vitals again. I felt so sick that whole night. I think just the anxiety, exhaustion, and me being starving was causing it. I got sick at like 4:30 that morning and ran to the bathroom down the hallway. I came back and dozed here and there till nurses were in for good at like 6. I think maybe total I got like mayyybe 2 hours of sleep. My poor mom too also got like zero sleep. Caleb came in that morning and he got no sleep. He said that the car was freezing and uncomfortable. So here we were for day two and exhausted. That morning doctors and nurses were in all morning. We finally met with the neuro team and told us what tests they wanted to do. Here came the not fun part. I knew there would be some hard parts because who would like watching your baby be poked and prodded for an IV, and the different tests to be done? I knew she was uncomfortable and tired, and she screeeaamed for the iv. Not fun. Once they got her iv in, they did blood work. After that, they got her all hooked up for her EEG. She also hated that. Then they did an EKG. They wanted to capture a seizure while being hooked up to the EEG. So she was hooked up to that for most of our stay. Other than that, we were there to wait till it happened again.
The EEG guy made her a bow ha
While waiting, we would switch off and take rest when we could.
So grateful for my mom.
We waited all day and nothing. The neuro team came back in later and said they wanted us to stay till they caught one. So because of that, they were sending us upstairs to a better room to stay. We were kind of surprised. Because of that, and now knowing how long we'd be there, we decided to send my mom back home. I felt so bad. I didn't want her to leave, but at the same time, there was nothing for anyone to do. We were just waiting. Plus having a 3rd person there wasn't going to work. I felt bad for even having her come because it was more of a hassle than I thought it would be. So, I had Caleb drive her down to the bus stop and she rode the bus home that night. I felt awful! Not fun. Oh, and side note, she almost got left at a rest stop because the driver "didn't see her get off". Oh brother. She got home at like 10:30 that night. As for me and Caleb, they finally got our room ready at like 8:30 that night. They came to flush out her IV before we went up and it turned out that Kinley sweat it out. Guh I felt bad! That meant she had to get another one later. :( They were ready to take us to our room. When they brought us up to it, I was ticked. It was a shared room, it was smaller than the one we were just in, and there was just a couple of chairs with only 1 folding to a bed. We needed sleep bad. The night nurse that night was not my favorite. She told me no to 1. bringing in Kinley's rock n play. 2. No swapping chairs for a 2nd bed. 3. No co sleeping. 4. Told Caleb to get off the floor from sleeping. I get it, hospital policies, but seriously, at least be nice about it. And make us at least somewhat comfortable. Anyways. Caleb slept horrible that night because he only had a chair to sleep on. I too didn't sleep good. The nurses come in A LOT.
Day 3. Still no seizure. We had a new nurse and she was absolutely wonderful. Best nurse we've ever seen. We were still just waiting for a seizure to be caught on the EEG. So we mainly hung out all day. That morning, we had to go down the hallway a ways but we found a shower and were able to finally shower and clean up. That alone made us feel a bit more human.
Kinley also had a much better day that day since she wasn't being poked around all day.
That evening, my sister came to see us. That meant so much to us. She drove almost two hours to see us. It was nice to see her and made the night go by faster which was nice. Then late that night, my cousin came to see us as well. She works there and I had no idea. It was also nice to see her. We also got neighbors. I was a little peeved just because there is literally a curtain between us. No privacy. You can hear every conversation, and you are basically sharing a room with strangers. It was a couple with a brand new baby. You could tell they smoked, so I could smell it all night. Caleb was taken to a Ronald McDonald room. He slept there that night. He said he still couldn't sleep great because he was up worrying about us and it was hard for him to not be with us in our room. I too hardly slept again because the neighbors had one sick little baby and there were nurses with the most squeaky dang shoes alive over there ALL night. Plus, they had to go through our room to get to their room. They were not quiet at all, still talked loud as if it were daytime. So, that was annoying.
Day 4. Morning came around and still no seizure. They said they wanted to do an MRI that morning. They had to sedate Kinley and because of that, I couldn't feed her past 5 that morning. It was so sad! She cried a lot because she was hungry. That morning, the neighbors baby like, almost died. The machine was beeping and within seconds, their room, our room, and the hallway was filled body to body with doctors, nurses, and security. It was very intense. Because of the chaos, Kinley's MRI got bumped back a little bit. During the chaos, they had to put in her 2nd IV. That was again not fun to watch. They poked and prodded at her little hand and almost had it, but then didn't. So they removed that one and tried a different spot. Again, they poked and prodded but they did get it. Kinley SCREAMED through it. Ugh it's hard to watch. Plus she was starving, I was dying because my nurse hadn't brought me a pump yet, and we all were just ready to get this over with.
Then they came to remove her EEG stuff. It's VERY sticky goopy stuff so it pulled her hair and some spots it ripped her skin too, So sad! Finally about noon, it was time for the MRI. That too was not my favorite. The thought of them having to put Kinley under just made me sad, and scared me too. They're bodies are just so small and pure and it was just scary knowing she had to be put under. I held Kinley while they gave her the anesthesia through her IV. As I held her, I watched her be alert to then go limp, then to sleep. Once she was put under, I had to hand her off to a lady who then took her to the MRI machine where we watched as they strapped her whole body down so they could do the scan. I started to tear up watching her. As we walked away, I just started to cry. I know these things are done every day to babies and people, but this was my baby here and it was just hard to watch. I didn't want to leave her for a second. While they did the scan, we left and hurried and found a shower down our hallway. I knew the scan was only going to be about an hour so I hurried and got myself somewhat put together. Before they brought her in, I got sick again. My stomach was everywhere from the stress. They wheeled her back into our room about an hour later. We tried to wake her for a good hour and she wasn't having it. She finally stirred enough to eat, then went right back to sleep. She was very groggy and sleepy for the rest of the night.
The Neurologist came in to talk with us. Kinley has Epilepsy. Another word for someone that has seizures. The EEG and MRI looks good, which is good. But it doesn't explain why she is seizing. So we still do not know what is causing it. What we do know by just the videos we have caught, is that her seizures are partial complex seizures that rapidly go to general complex seizures. As of now, they put her on a seizure medication. It's trial and error of medication and dosage to know what works and doesn't. She may grow out of them, she may not. If she does grow out of them, it typically isn't until older childhood, young adolescent. It depends on the person. We will be back down in a month for a follow up if this medication works. So, all in all, this is good. Still we wonder why she is having them, but at least we now know that it's managable with medication and she has been seen. There's seizure precautions we were told about and we need to still keep a close eye on her. We feel good about the outcome and we hope this medication is the right dose and does the trick in keeping these seizures under control.
Her poor head :(
We had to wait till she was eating good and making wet diapers before we could get discharged. We did get discharged around 7 that night.
Ready to go home!
It felt so good knowing we were headed home. The ride home was a bit rough. Kinley you could tell just didn't feel great, she had a massive blowout in her car seat, she cried a lot, we were so tired and just ready to be home. We finally got home at like 11. I gave Kinley a bath, then we all went to bed. I think I fell asleep before my head even hit the pillow.
Her little bruised hand :(
Feeling MUCH better being home.
Looking back at the experience, it's interesting to me. I look back to the time I just KNEW something was wrong. I had this weird feeling for like 3 solid days and I couldn't put my finger on it. Then that morning she woke and had her first seizure, I then knew why I was feeling like I was. The spirit is strong. After two doctors brushing off the situation, I still wasn't happy nor did I feel right about the situation. I KNEW, they were seizures. I knew we needed to take her to that 3rd doctor. I knew we needed her seen by Primary's over the doctor in IF. I do feel like mom's have this sixth sense and just know if something is wrong with their baby. I don't think there is anyone that knows their baby more than the mom. I am grateful for my husband. He kept me strong and was the shoulder to cry on when It got hard. I'm grateful for my mom. She dropped anything and everything to be with me for emotional support. I'm grateful for all our family, and friends. I had SO many texts, calls, messages on Facebook, a couple of people put our names on the prayer roll at the temple, and just a ton of support. We felt everyone's prayers and are so grateful with how blessed we are. We are grateful that Kinley is still otherwise very healthy. We sure love you sweet baby!
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