When we got home from the hospital, it was almost as if we felt like life was sort of back to normal. A breath of fresh air. We knew we weren't completely out of the woods with Kinley's epilepsy, but we were hopeful that her medication would put these seizures in the past--and for good. We spent the rest of the weekend trying to catch up for the 4 days we were gone.
Sunday afternoon rolls around and I was holding Kinley while she was sleeping. When she woke up, I knew what was going to happen. I can usually tell just by her actions, and the look in her eyes. You guessed it. She had another seizure, once again in my arms. I yell to Caleb and told him she had seized again. It's a tough pill to swallow every time it happens. We were seizure free for almost a week. Now we were back to square one.The doctor did say to give her medication a minimum of 3 days and up to two weeks for it to get into her system. So, we went on about our day hoping that was the last seizure ever.
Oh how I was wrong. It was Wednesday. I once again woke to her squirming that morning. A little side note, her seizures have only happened when she wakes up. Every single one of them. Because of that, I wake from a light sleep at any movement or noise I hear. I roll over and turn my lamp on. She had "the look" and again out of no where, she began to seize. I do my routinely protocol. Roll her to her side, grab my phone, record it, which also times them, wait it out, jot it down in my notebook that keeps track of all her seizures. They leave me nauseous and shakey every time. Caleb had already left for work. I shot him a text and told him what had happened. My sister in law and her boys were coming over that morning for haircuts. So I rushed to get ready and kept my eye on Kinley. I kept repeating in my head what the doctors had told us and was holding on to every little positive thing I had heard. My sister in law and the nephews show up. I got their hair cuts done and when they were about to leave, Kinley woke from a nap and once again seized. I had never had anyone else around but Caleb and my mom see them so I didn't really know how to act. (Sorry Amy :/) All her seizures have so far been around the 2 min mark. Once she left, I again texted Caleb and said that round 2 just happened. He called back and said that he thought the doctor said that if she has 3 or more in a day that she needs to be checked out. I honestly couldn't remember. There was so much information given to us that I could not remember everything. I was trying to be there for Kinley. She usually does ok after just having one, but 2 or more and she goes down hill fast. She is wiped. Her body is limp, a dead weight. She won't even hold her head up. Between trying to take care of her, and a million phone calls between Caleb, the doctors, and other family, it was starting to overwhelm me. I needed to think things through. What were we doing? What was our plan? What if she has a 3rd? I finally get a hold of the neurologists nurse. As of now, we were ok to not take her in. We only need to take her in if she had 3 or more within 15 min. I tell her what is going on and after she talked with the neurologist, it was decided to double her medication. We were supposed to wait at least a few days to know if it had any affect. So, again, we were here to wait and hope she doesn't have another seizure. Because of the chaos, Caleb was able to get out of work because we thought earlier that we were going to have to take her in again. He was now home and I was no longer alone. That was a huge relief. We went over what the doctor said and just planned for a worst case scenario. We had planned out that if one of Kinley's seizures had her stop breathing or made it to the 5 min mark where we would need to call 911, that we would know what to do, how to stay calm, and how to be the most efficient in a terrifying moment. I mainly wanted to know how to go about it all if I were alone and Caleb were at work. It's so crazy to me that I have a plan of how to get an ambulance here if needed. Who has to think about that? Like actually realistically think that that may happen. During our chat, Kinley was waking from a nap. We were geared and ready for it to happen. We know it happens just about every time she wakes up. We had our phone ready and on record and were just waiting. I was holding her again and sure enough. She began to seize. Oddly enough, it's like we are almost getting used to them. They are horrible to watch, but because there have been so many, we know the routine, we know the protocol, and we know what's to come. All of her seizures kind of vary. Some are more mild, some are more intense. None are fun to watch, but man, the more intense ones are the ones that really get me. This one was about 2 min. again. Now that she had had 3, you could tell she was done. She was wiped. She went back to sleep. About an hour later, she wakes up in my arms again. Caleb was there still since we were still talking. A 4th was about to take place. I can tell when she is about to seize most every time. She has a look about her and the way her body is, I can just tell it is going to happen. She began to seize and this was her longest yet. It was a more intense one and was not fun to witness. Again, the shaking, twitching, grunting, noises made, drooling, it all will forever disturb me. 2 min...2:30....3 min. I am really starting to panick. Please stop. Please stop. 3:10...3:20...3:23 and it stops. A huge sigh and my baby starts to cry. I start to cry. She is weak. She is limp. She acts exhausted. Can't hold her head up, super fussy, wants to be held and sleep. 4 in one day? The day is young, who knows how many she'll have. I am nauseous. I want to puke, I want to cry, I want Caleb, I want to be mad, I wanted them all to just stop. Please just stop. I wanted my happy healthy baby back. Why us? Why her? I just wanted it all to be over.
When I went to bed that night, I was scared to death. I was emotional. I didn't want to go to sleep. I didn't want Kinley to go to sleep. I didn't want Caleb to go to work the next day. I didn't want to be home alone without him there. I kept telling myself that "tomorrow is a new day, and will be a better day." I and held onto those words in hopes I would be right. Yet, I was once again wrong. I woke up yet again to Kinley seizing. 1st seizure at 7:30 a.m. She fell back asleep. 8:30 a.m. I woke again to another seizure. She fell back asleep. 9:50 a.m. I woke to another seizure. She never sleeps in that late. I knew she was wiped. She was just like the day prior. Fussy, limp and wiped out. I called the neurologist and told them that I know it's early to notice a difference, but I want to switch medications. They've only gotten worse. After phone tag between the doctors and Caleb, my dad showed up at my house. It was so nice to see him. It was nice to be able to talk about things and also very nice to not be alone. While my dad was there, I got a call from the doctor. They thought it may be smart to do another EEG while she is having so many seizures. They suggested that we do it at a hospital here so we wouldn't have to drive all the way down to Salt Lake again. Long story short, no hospital here will do an EEG on a 4 month old. After talking things through, we stayed with our original plan and were going to wait em out and hope that this medication works. Kinley had 4 more seizures that day equaling out to 7 for the day. Her last one scared me to death. She was eating and dozing off. She stopped, and began to seize. I rolled her to her side but the noises made scared me. I could hear that she still had milk in her throat and I didn't know what to do. I yelled for Caleb kind of in a panic. He came running in. He saw what was going on too, but what do you do? I was just hoping and praying she wouldn't choke, and that it would just dribble out the side of her mouth. The two minutes was up, and she stopped and immediately fell asleep. I once again, cried because it just scared me. I usually do ok but the ones that seem bigger, more intense, and when there are noises, they are usually the ones that make me feel very scared. Caleb reassured me she was ok. We were ok. This unfortunately is just a rough patch in life and we will get through it. I went to bed nauseous and finally fall asleep. Kinley woke up every. single. hour that night. Another day has rolled around. I cracked open a dr pepper and was ready for a new day. I feel like a zombie today. I have bags under my eyes, and a headache that won't leave. All night I was so on edge wondering if she'd seize through the night. She never did which was surprising. But, by 8:30 this morning, Kinley had already had 2 seizures. It's now 6 p.m. and she's had 7 total today. Sadly, I am just planning on more. She's currently asleep in my arms and I'm just waiting for her to wake up and seize.
I have no idea what the future holds. I don't know what tonight, tomorrow, or the next day will be like. Seizure free? More than 7? No clue. I have no idea if this medication will work. Not to be a downer, but I honestly feel like it won't and that we will be trying something else out here soon. I don't think I have ever been so scared in my life. I guess because I'm a newbie at all things seizure related, it's all new, it's all very scary, and there is a lot to learn about them. I'm trying to do a bunch of research and I call the nurse any time I have a question. She now knows me by name because I've called so much. I'm THAT mom. The more informed I am, the less freaked out I am.
Certain things have triggered bad memories. Certain outfits that Kinley has worn when she has had a seizure, especially her big ones that lead to bad memories, I can't seem to put her in. Certain times of the day, certain area's of the house, just anything that triggers the scary memories I seem to avoid. It's getting harder since it's happening so much.
I fear things that most people wouldn't think twice about. I fear sleep. I HATE going to sleep at night. I hate when Kinley goes to sleep because I know when she wakes what will happen. I hate that I can't do anything as simple as take the garbage out, or run bills to the mailbox because I fear that while I'm out for the 2 min, that she may wake up and seize while I'm not there. I fear I will look back at her in the car and see her seizing, or the multiple times I check on her while I shower not sure what I'll see when I open the shower door. Will I wake up to my baby seizing? Or will she be sound asleep? Will I look at her in her swing where she's had previous seizures and see her seize? Or will she be content and loving it? I feel like I cannot and will not be away from her or her not in my site. I know some people have told me that I cannot let this rule my life, but until she is seizure free, it probably will. I think I will become a hermit and have Caleb run my errands because I don't want to be out alone and have her seize on me multiple times.
I hate that in the moment of her seizing, that all I can do is watch and sit there till it's over. I feel hopeless. I hate how it makes us all feel. I hate that she has to go through it. I hate that all she knows right now is how wiped out she feels. She occationaly smiles, but they're soft, almost as if they're weak. She's not like she was just a few days ago.
Caleb has become the biggest softy I have ever seen. He isn't one to cry or get emotional about things and tends to keep scary things to himself. I have seen him become so soft hearted and really open up about this. Apparently Kinley just made him a big ol softy. He nearly cries when he sees her seize or looks back on videos. Shh, don't tell him I put this on here.
My sister in law and mom both have told me that even though this is a trial, that if I look for the blessings in it, they'll be there. I have honestly tried and am not seeing much. I more so have felt angry. It's selfish of me because I know this isn't about me, it's about her. But parts of me wonders why god would give us the heartache trial of infertility. The medical bills, the trying and frustration and heartache that comes with it, to finally, finally getting pregnant, waiting so long, finally meeting this sweet baby, and now throwing this at us and making her go through this. It doesn't seem fair. I know he has a plan and apparently this was part of it. I'm still trying to find the good out of it but I'm just not there yet.
I have an appreciation for single parents. What a hard thing to do, especially with a child that has any sort of sickness or medical issue.
I am grateful that I am a stay at home mom. I am grateful that I can put my full attention toward Kinley during this time. I'm grateful for Caleb. His support is what keeps me going. It seems like he is at a strong point when I am at a low, and that I am strong when he is at a low. We work together. We are positive for each other.
I am grateful for the support we have received from family and friends. The countless texts, messages, checking in, just everything means more than they'll know. Today we were given an oil diffuser with a couple different oils. Both me and Caleb have never gotten into the whole oils thing but we figured we would give it a shot. What do we have to lose? Our house stinks like old people now, but if it makes her seizure free, I will gladly smell like an old person. Still, we are SO thankful for the fact that someone even thought about us and is willing to give us something that could possibly work.
I'm grateful for the help that Caleb has received at his work during a super hectic week so that he can now be home with me for the weekend. It's scary to be alone even though I've seen a bunch and know what I'm doing.
I honestly feel like because of going through infertility, I have truly cherished every moment with Kinley. But now dealing with seizures, I greatly cherish those small grins I get, the laugh I haven't heard in a couple days, the coos and bubbles made. I celebrate every. single. milestone. If she wakes up and doesn't seize, that's huge! If she went more than two hours without a seizure, that's also huge! If she has only 6 seizures instead of 7 in a day, that's progress and also huge. The smallest victories can make me happy and recharged.
I am determined to get my healthy babe back. Life lately has literally been sleep, seize, diaper change, eat, repeat. She has been fussy, limp, whimpers, and is so not herself. She is typically such a well natured little thing and it is heartbreaking to see her so miserable. Especially because I don't know exactly what she is feeling. I hear that people that have seizures, especially multiple a day, there are headaches, sometimes migranes, muscle aches, and simply just wiped out. I can't imagine what she is feeling right now. I know she is exhausted. She won't let me put her down for anything. She is wiped out. We will get through this. We will get this managed at some point.
I will do whatever it takes to get my sweet cheeks back to herself and seizure free. I hope and pray this medication kicks in and solves the seizure problems. If it doesn't, I pray that the next medication will so that Kinley can get some relief. We sure love you baby girl. More than you will ever know!!
No comments:
Post a Comment