Since we came home from Primary's last go around, Kinley's seizures became way way worse than before. Before, she was having 1 every 4 days or so, and randomly had 3 in one day which led us to our first trip to the hospital. She was having like 6-8 seizures every day for 6+ days in a row. All through this time, I was a mom that was trying to stay strong for my baby, but inside, I was a scared hot mess. I cried a lot. I couldn't sleep, I didn't have an appetite, I felt sick from the worry and stress, and my heart was just seriously breaking from what I was witnessing day in and day out. I couldn't go anywhere, and all I wanted was either Caleb or my mom, and for these seizures to just stop. I was on the phone back and forth with the nurse from Primary's all throughout the week. We were told to double her dose, so we did, and there still was no change. I was getting frustrated because this particular nurse I felt like wasn't taking me serious and kept saying things like, "if they're seizures, if they're seizures, if they're seizures" or "an EEG will only CONFIRM that they're seizures IF that's what they are", or "it may not be seizures, babies can do weird things that can make parents assume", or "you just need to give it time to let the medication kick in. I'm sure that's what the doctor will say too." Stuff like that. I kept interrupting her and was kind of getting mad. Like, yeah, I am totally making up that my kid is having seizures. I KNOW that this isn't just a weird thing that babies do. I have over 30 videos on just my phone of these seizures and plenty on Caleb's phone too. Even though they never caught a seizure on the EEG last go around, the Neurologist was confident that that's what they were. Yes, obviously, they cannot CONFIRM that's EXACTLY what they are until it's been caught on the EEG, but what was frustrating was that she wasn't taking me serious. We HAVE waited for this medication to kick in and they are only getting worse and I am not just going to sit here and have my baby seizing countless times a day and have day after day be awful for her. She couldn't function. She was 100% wiped. Her eyes were heavy, she would just lay there and not move. She wasn't cooing, blowing bubbles like she normally would, she would sleep every second she could, she wouldn't let me put her down, nor did I want too, just things like that. It was no quality of life. She wasn't able to learn, and grow, and every day counts. We had been at this a month and I was seeing a decrease in her development and I know it was because of the seizures. I was the annoying mom calling multiple times a day, just to find out every time that she "hadn't talked to the Neurologist yet" and then it would be after 5 and the office was closed so I'd be out another day.
On Sunday, we had a huge family fast for Kinley. It was a new experience for a lot of us because I'll be honest, I never fast and a lot of us don't really do it. I didn't really know all the rules and what not until my dad told me. We had family that chose to fast for the first time for our sweet girl. It meant a lot to us. Earlier in the day, my mom and dad came by so that my dad and Caleb could give Kinley another blessing. I love blessings. I seriously cry through them every time. Listening to them always gives me reassurance, a re charged feeling, and hope. They also just make me very grateful for the men in my life and that they hold the priesthood so that they can give them. Later that night, my mom invited us over for dinner to break the fast. I was hesitant because I knew Kinley would seize while there and I didn't want to stir up anything or cause a scene with all of my family there. We did end up going. It was nice to get out of the house even for a short 7 minute drive to my parents. My whole family was all so supportive. During our dinner, Kinley was currently sleeping in my arms and I knew that when she woke up, she would seize. Just as dinner was almost done, she started to wake up and I knew it was about to happen. Both Caleb and I quietly moved to the living room where no one was so we could take care of the situation. She began to seize and for me and Caleb, we did what we normally do. My family surrounds us and also watched her seize. Helpless, you just sit there and wait till it's over. It was kind of hard seeing my family see her because you could tell it wasn't easy for them either. She had 2 while we were at my parents house that night. Everyone just had a lot of sympathy for her.
Day 1. Monday, I called the nurse again. Just like earlier in the week, I wasn't getting anywhere. I took it upon myself once again. I ended up calling the on call neurologist at like 6 on Monday night because I once again, didn't get a call back from this nurse. They said to only call the on call doctor with emergencies, but my vote was, that this WAS an emergency and because I wasn't getting the help elsewhere, I ended up calling. This doctor I had not ever talked to, was more than awesome. I told him what was going on, what this nurse was telling me, and we both disagreed with the nurse and agreed with each others plans. He wanted us down there for another EEG that next morning at the hospital at 8 a.m. so that we could hopefully capture these seizures on the EEG because it can tell them a lot more about these seizures. I was so happy because that's also what I wanted done. That's why we were down there for 4 days the last time and it never ended up happening. Now that she was having multiple seizures a day, I felt confident that they could capture some. So, because of the plan, we were packing up and headed out that night again. Ugh. Another LATE start to this whole deal. After getting a quick dinner, us packed, gassed up and on the road, it was 8:30 p.m. We were just headed to a hotel there in Salt Lake. Because Kinley was having so many seizures and because it's so crucial to have her rolled to her side while seizing, we had to pull off the road twice because of her waking up and about to seize. Both times, she never went into her full blown seizures. She always does this weird thing prior too them that we later learned are seizure related. But, seriously? What the heck? She had seized EVERY. SINGLE. TIME. when she wakes up, why not now that we were on our way down again? Anyway, One of those stops, I had to give her her medication anyway, so that stop was worth it. The rest of the drive was a nightmare. We had to stop 5 total times because Kinley was either about to seize, needed fed ( she still eats every 1.5 hours. Yes, I feel like a milk cow.), or because she was SCREAMING. It was such a long drive. It was late, I haven't slept in weeks, I was SO tired, and we just wanted to be there already.
Day 2. We FINALLY got to our hotel around 1 a.m. By the time we got up to our room and kind of settled in and to bed, it was about 1:30 a.m. My alarm was set for 6 but I couldn't sleep great and was up prior to 6. Super. I was running on about 4 hours of interrupted sleep. Oh, and I was STARVING. Like, feed me now or I'm going to puke starving. That's partly why I couldn't sleep. My snacks were not holding me over. We hurried and got ready. Kinley woke up that morning and I was waiting for a seizure. She DIDN'T have one! Oh my gosh, if she wasn't going to have one on this EEG I was going to be mad. What the heck? Anyway, it was an expensive 6 hour stay, but we were packed back up and headed up to Primary's early that morning. We got there and after checking in and what not, they took us to our room we would be staying at. It was better than the last room we stayed in and I was super happy about that. It was a private room, we had our own bathroom (still no shower), a window, and a couch that folded into a bed where we both could at least squish onto to sleep that night. They got things rolling really fast.
I knew Kinley was tired so I was hoping the EEG would be hooked up VERY soon so that if she fell asleep, that if she seized when she woke up, they'd catch it. That's the whole reason we were down there this time. They did come in like 10 min later and got her all hooked up. They also have a camera that you have to keep on her so that if she seizes, they can see what her body does. She once again hated it, but it had to be done. Now that she was hooked up, I was relieved. K baby, you seize away now. I wanted them to confirm they were seizures, and also get some answers.
About a half hour goes by and she begins to wake up. I tell Caleb to turn the camera on her while I put her in the crib there so they could get a good view of her seizures. I lay her down, Caleb gets the camera turned on her, and she begins to seize. I push the button for the nurse to come in, and also the button I was supposed to push on the EEG so they knew. The nurse came in within like 30 seconds and was happy they witnessed her seizing. All of a sudden, like 4 other people are in watching her seize. A couple doctors, and a couple more nurses. Her brain activity on the EEG was going nuts. They kept asking how long it had been and if they have IV access. Just over 2 min and she stops. Me and Caleb both were SO relieved knowing that they had at least caught one on the EEG. It's also less scary witnessing them in a hospital vs home. If something were to go wrong, we had the help right there. We were told they want IV access and that the neuro team would look over it and be up to talk to us. Because Kinley's seizures now wipe her out, after she seized, she fell back asleep. 20 minutes later, she begins to wake up. We do the same routine we had just done. I move her to the crib, Caleb moves the camera, and I push both buttons. She again seized. After it was over, I was even that much more happy that they now had 2 to go off of. Shortly after her seizure, IV team came in. I was DREADING this part. I know how much I hate needles and especially IV's. I would take every poke if I could. Both me, Caleb, and another guy had to basically hold her down while she screamed and got her IV. I watched and they tried in her hand. They poke it in, not get it, slide it out some, go back in, not get it, slide back out, go back in, and they couldn't get it. So they took that out and tried in her foot. I seriously like wanted to cry. Not fun to watch. They did get it in her foot. Thank goodness! They took some blood. Guh, poor thing. I picked her up, and just held her. She finally calmed down and fell asleep. Neurology team came in to talk to us about the EEG and further plans.
A little side note, since she had so many wires, I was stuck in that chair the whole time or I could put her in the crib. I couldn't lay down next to her or anything which stunk because I was tired, but didn't want to put her down.
EEG DEFINITELY confirmed that they ARE seizures. It shows where it starts in the brain and how fast it takes over the rest of the brain. They wanted her on another medication immediately. They knew more of what medication to put her on too just from the EEG. They came and gave that to her through her IV. They said it would make her VERY sleepy. And it did just that. She was OUT. Like that heavy dead weight type of sleep. They said if she didn't wake up to eat, that they would do IV fluids and also a feeding tube and that I could just pump and still give her breastmilk through the tube. That made me way sad. I didn't want to do either. If any of you breastfeed, you know just how hard it can be to either wean or not do it because you aren't able too. It's that bonding hormone and for us, it is strong. I've exclusively breastfed since the day she was born. I didn't want to give it up, not even for a day. I wanted to cry. I didn't want to have to feed her that way. They wanted to do some more tests just to rule out anything else. Blood work, urine sample, and possibly a lumbar puncture. I was sad for my baby. I didn't want her to have a lumbar puncture done. I just wanted her healthy and to take her home so they could stop poking her and doing vitals all dang day. For the rest of the day, we were there to just wait, continue watching her EEG activity, and hope that she would wake up to eat.
After a couple hours, I stirred her enough to see if she would eat. She did! That was a huge relief for me. I continued to stir her throughout the day every couple hours so she would eat and hopefully continue to make wet diapers to prove it. The rest of the day went ok. We basically just hung out while they monitored her EEG. We tried to go to sleep early because we all know that hospitals start the day at like 4 am.
Day 3. Through the night, they were able to put a bag in her diaper to collect urine for the tests they wanted to run from that. The night was ok. We both stirred a lot because Caleb's feet were at my head, and my feet were at his head. It was the only way we would fit on the bed. Then, phlebotomy came in at 5:30 that morning for blood work. Once again so sad! They couldn't take blood from the IV so it was again another poke. Not a fun way to wake up. After that, the nurse came in for more vitals. I was able to get her back to sleep. I decided to just hurry and get ready because I knew if I didn't then, that it probably wouldn't happen. I just washed my hair in the sink in our bathroom and kinda cleaned up there rather than wait for a shower because they both were full. The nurse told me that that was all the testing she knew of that needed done. When the neurology team came in that morning, I asked if they were going to do the lumbar puncture. They told me because of her EEG, that they didn't feel it wasn't a necessary test anymore. I was so happy to hear that. From the EEG, they were able to see that she definitely has general complex seizures. From the looks of things, it was very possible that she could outgrow them by the age of 3 ish. Not for sure, but it's possible. Her brain at this stage of life is still developing and has yet to develop a cover thing over a certain part of her brain which is causing it to miss fire every time she wakes up which then causes the seizures. The medication they put her on calms the brain so that's why she is so sleepy. All in all, this is good news! We were happy to now have at least an idea of what is going on and not be left completely in the dark.
Since the dose of medication in her IV, she hadn't had another seizure. She wakes up and is just normal! And that nearly makes me cry happy tears. Since she was seizure free for 24 hours and eating well, they were going to discharge us. They could remove the EEG.
I was able to give her a sponge bath over a little bucket of water to get the EEG goop out of her hair. Later right before they discharged us, they took her IV out. She was finally free of all cords and things on her. They brought in the paperwork and Caleb picked up the prescriptions. We finally were discharged. That process alone takes forever I swear.
We left the hospital about 2:40 that day and got home at 6. We didn't have to stop once! Kinley was an angel the whole time. Took two naps, and was just content otherwise. It felt so good to be home again. This time we both felt much better about the outcome. We are hoping to stay seizure free! 1 day and going strong! We are continuing both medications for now. It is kind of a hassle. One medication is in pill form, so I have to crush it and dissolve it in whatever. I now pump just enough milk for that and give it to her through a syringe. That's once a day. The other medication is still twice a day. We go for more blood work in a week, and then again at her checkup in 3 weeks. They have to monitor the medication in her blood because apparently it's pretty strong.
Last night was the first night I actually slept. Because Kinley's medication knocks her out, I didn't wake up to her constantly stirring. In fact, I don't think she moved all night. I woke HER up at 6:30 to eat this morning, then she went right back to sleep till 9. Pretty sure I could sleep for weeks but I will take last nights sleep any day. It was great.
Here's to hopefully getting our lives back together. A hopeful future. A bright future. A seizure free future!
