Good and bad days will come and go. I sure hope today goes away and that tomorrow is a better day. Yesterday and the day before that were good days...no...AMAZING days! She was good as gold and never complained of one ounce of pain or irritation whatsoever. But then the night came and she was having leg pain and neck pain around 7pm. She couldn't take her pain meds until 11pm so I knew it was going to be a long night. She finally fell asleep around 9pm and seemed to be peaceful. Around 10:45pm I heard her crying in pain again. So I gave her some medicine 15 minutes early and gave her some massages on the sore areas and prayed by her bedside. Some days and nights I feel so incredibly sad and angry that this is happening to my girl. But then I stop that thought instantly knowing that we were given this trial for a reason and that we (especially Kylee) are strong enough to get through this and that IT WILL PASS! I think of others who have it so much worse than me. Who have children with terminal illnesses, or who have even lost children. So I have to keep reminding myself that everything will be ok and to REJOICE on the good days, and pray a little harder on the bad days.
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So the night was horrible and Kylee and I hardly slept at all. But around 4am she finally got comfortable and seemed to sleep peacefully for about 2 1/2 hours. She woke up on her own around 6:30am and got up to start getting ready for school. I asked her if she was ok and she said she felt fine. So we proceeded on with our morning, ate breakfast, got dressed, etc...and I took her to school with 15 minutes to spare. I thought that the horrible night was just a fluke and that she was going to have another good day. Well at 9:30am, 2 hours after I dropped her off, the nurse called and said that Kylee was in tears and pain complaining of stomach pains. I could hear her cries in the background. I told the nurse what I tell her everytime this happens...to give her an icepack and have her rest for a few minutes until she calms down...and then send her back to class. This works most of the time. Well it didn't work today. I got a call 10 minutes later and she was now crying even harder. So I drove to the school to talk to her and hopefully calm her down and send her back to class. She can't miss anymore school so I try everything in my power to keep her there as long as I can. She was hysterical and kept insisting that her stomach really hurt. So I told her to go to class, get her homework for the day, and I will check her out. When she came back, she was crying even harder and holding her head. The pain was now in her stomach and her head. Ugh...saddest thing ever! She wasn't due for more medicine for another 5 hours!!!
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When we got home I sent her to my room where it's nice and dark and had her close her eyes and take a nice long nap. She didn't sleep much last night so I know she was tired and that her body was probably acting out as a result of not getting the rest it needed. She slept for a solid hour and a half and woke up happy and pain free. I had to run a few errands and today was the last day I could get these errands done, so we went off to Costco and Target. The drive to Costco was about 25 minutes and when we got out of the car, she complained of tingling in her legs. Whenever she complains of tingling, it's very alarming because that is an early sign that the GBS could be taking her legs...or in other words....paralyzing them. But luckily the tingling went away about 5 minutes later. But still, this will be noted and mentioned at our neurology appointment next week for sure!
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Costco was good...no pain or complaints. Then we went to Target to get a few things as well. No pain or complaints. As we were driving home from Target, she started complaining of stomach pain again. We were about 5 minutes from home at that point. We got home, she laid down, and I put an icepack on her forehead and her stomach. I really don't know if the icepacks do anything physically, but they sure do help my baby girl mentally. She fell asleep again and rested peacefully for another hour and a half. After she woke up, she seemed good again and pain free. I had a fun girl's night planned that night so I laid Carter down for a nap, made sure Kylee was good, and jumped in the shower. When I got out of the shower, Kylee was complaining of stomach pain and a headache again. It was really hard to get ready and cook dinner for everyone when I had to stop and give Kylee head massages and cuddles every 5 minutes. Luckily David was on his way home from work so I could get some help!
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After about an hour, Kylee started to fall back asleep. She was definitely a tired little girl! I felt better knowing she was going to be sleeping peacefully when I left for my girls night. David was home and ready to take on the "nursing" duties. I felt a little guilty leaving but I was anxious to get out and recharge my batteries with my friends. We were going to Oregano's to eat dinner and afterwards we were going to go to a comedy club. About halfway through dinner, I got a feeling that I should not go to the comedy club and just go home. Maybe it was a feeling or the fact that Kylee called me 3 different times asking me when I was going to be home! Throughout this entire experience, Kylee and I have been glued to each other...for obvious reasons. She needs me just as much as I need her. It was hard for me to leave tonight when I haven't left her side yet...except for when she goes to school for a few hours each day. But I went to dinner and had a great time...but then came home and didn't go to the comedy club. I was definitely being guided by the spirit tonight because right as I walked in the door, David walked me to our bathroom where I discovered that Kylee had thrown up all over. If David was home by himself and had to clean it up, he would have gotten sick himself. So I was welcomed home with this pleasant surprise, but was so glad I was home to take care of my family.
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After this happened, I was concerned as to what this could mean in combination with GBS. I looked online and found something concerning to me. It said that headache, vomiting, and fever are often followed by paralysis. It said that if Kylee starts to feel tingling in her fingers and toes, that is a sign that paralysis is soon to follow. So we are keeping an even closer watch on her and asking her constantly if she feels tingling anywhere. I told my Mom about this and she asked if vomiting was a side effect of the medicine Kylee is on. I looked that up right away and found that it is! Headaches, weakness, nausea....they are all side effects of the gabapentin and all things that Kylee has been experiencing lately. So this helped put my mind at ease just a little bit.
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After Kylee threw up she was saying she was thirsty and hungry. So she drank water, ate a popsicle, and even ate some saltine crackers. She actually went to town on the crackers! I knew that she didn't have a normal stomach ache. That's definitely not what made her throw up...because she had a serious appetite after she threw up. She kept it all down for a solid two hours and we felt good about things again. 11pm rolled around and it was time for Kylee's last dose of gabapentin. She had 4ml's like she always does. She went straight to be to lay down and I decided to grab a bowl just incase her stomach acted up in the middle of the night. When I walked into her room, she was laying on her bed and her face was incredibly pail. I asked if she was ok and before she could answer me, she sat up and starting to vomit. I was right there to catch it all in the bowl. Well, included in the bowl was her entire dose of gabapentin she had just swallowed. How was she going to sleep peacefully without pain for 8 hours without her medicine in her system!? I got really nervous and decided to call the on-call doctor to get some advice. He had me test her for appendicitis...negative. He had me check her temperature....no fever. He asked me a serious of questions that lead to no problems. So he determined that her body was most likely just getting rid of "gunk" left over from all the anti-viral medications and other meds she was on for 10+ days at the beginning of her diagnosis. It had been a week since her last dose of all those other medicines, but her body was still holding onto some of it and had to get rid of it. This made me feel better knowing this. If she was able to sleep through the night and keep down water, then this was definitely the reason for her vomiting.
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So for now we are just praying she sleeps through the night in peace and is back to her normal self tomorrow. Today has been the WORST day yet. She is in desperate need of a good day tomorrow!
After Kylee threw up she was saying she was thirsty and hungry. So she drank water, ate a popsicle, and even ate some saltine crackers. She actually went to town on the crackers! I knew that she didn't have a normal stomach ache. That's definitely not what made her throw up...because she had a serious appetite after she threw up. She kept it all down for a solid two hours and we felt good about things again. 11pm rolled around and it was time for Kylee's last dose of gabapentin. She had 4ml's like she always does. She went straight to be to lay down and I decided to grab a bowl just incase her stomach acted up in the middle of the night. When I walked into her room, she was laying on her bed and her face was incredibly pail. I asked if she was ok and before she could answer me, she sat up and starting to vomit. I was right there to catch it all in the bowl. Well, included in the bowl was her entire dose of gabapentin she had just swallowed. How was she going to sleep peacefully without pain for 8 hours without her medicine in her system!? I got really nervous and decided to call the on-call doctor to get some advice. He had me test her for appendicitis...negative. He had me check her temperature....no fever. He asked me a serious of questions that lead to no problems. So he determined that her body was most likely just getting rid of "gunk" left over from all the anti-viral medications and other meds she was on for 10+ days at the beginning of her diagnosis. It had been a week since her last dose of all those other medicines, but her body was still holding onto some of it and had to get rid of it. This made me feel better knowing this. If she was able to sleep through the night and keep down water, then this was definitely the reason for her vomiting.
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So for now we are just praying she sleeps through the night in peace and is back to her normal self tomorrow. Today has been the WORST day yet. She is in desperate need of a good day tomorrow!
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