Two weeks later, May 5th to be exact, Kiley woke up around 3 am crying. She stopped, so I left her in her room and then she woke up around 5am. I went up to her room and she was standing by her bed. I told her she could come lay with me. I started walking out of her room and as she started to follow me she almost fell into the banister. I picked her up and brought her down to our room. Mikey happened to go into work later than normal so he was still home. We both agreed that something seemed off with her so I decided to keep her home from school. She went with me to take Presley and Bentley to school and then we came home and laid down in my room to try to go back to sleep.
Kiley fell asleep. I laid there and decided to email the doctor to tell her what was going on. All of a sudden, Kiley picked her head up and started seizing. I had never been by myself during a seizure. I had my phone in my hand and decided to record her seizure because people always ask what they look like. I continued to watch the clock and tried to call Mikey over and over. Once she hit 10 minutes, I had to call 911. They arrived less than 5 minutes later and she finally started to come out of it. They took all of her vitals and couldn't find any illness or fever that could have induced the seizure so they recommended that we go to Children's. We finally got a hold of Mikey and he actually beat the ambulance there. The ER ran every test possible and couldn't find any illness that could have caused the seizure so they prescribed a seizure medication and recommended that we make an appointment with a pediatric neurologist. By the time it was time to go home, she was all smiles again.
After thinking more about that morning, I realized that Kiley had probably had a seizure around 3am and then had one again at 10am. In combination with the one a couple of weeks prior, she had 3 in 3 weeks, so we knew something wasn't right. When I made the appointment with the neurologist, they also scheduled us for a sleep deprived EEG. Kiley was only allowed to sleep 4 hours. We decided to let her sleep from 12am until 4am. So I took the night shift and Mikey took the early morning shift. I took Kiley over to my friend, Tamra's house while Mikey put the kids to bed so that Kiley wouldn't see them go to sleep. We drove around a bit and then as soon as I got her home, I sat her at the dinner table and fed her dinner.
After dinner I let her take a long bath. The last 30 minutes were the hardest. I let her play with some eggs and I was literally holding her head up by midnight.
Mikey got her up at 4am and they went to Walmart for 2 hours! When they got home, we left for the appointment. Getting her ready for the EEG was quite a process.
The purpose of sleep depriving her is that they also want to watch her brain activity while she sleeps. She did fall asleep so Mikey and I did our jobs. After the EEG, we talked to the doctor. I showed her the recording of Kiley's seizure and she said that if all of her seizures over the last 7 years have looked like that then none of them have been febrile. They are more than likely being caused by her syndrome. So she said to continue with the medication that the ER prescribed. She takes it twice a day to prevent seizures. The main side effects are behavior related and we pray she does not have any. So far, so good! She also recommended that we have an MRI on Kiley's brain so that she can see how it has developed. By the time we were done, we were there over 5 hours and were mentally and physically exhausted.
When I first called to schedule the MRI, they wanted clearance from her Cardiologist since they would have to sedate her. When I called the Cardiologist, they said that Kiley was due for her two year checkup so I scheduled that instead.
She did so good and not only did we get clearance for the MRI, but we don't have to go back for 5 years!! So, I called and scheduled the MRI for the Monday after we got back from Missouri.
We promised the kids on our drive home from Missouri that if they were good we would take them to Bahama Bucks the next day. So, on Sunday we took them on the golf cart to get sno cones.
When we got home, I went in the bathroom to take a quick shower and the kids followed me in. We have two closet doors to the same closet and they were running around the closet and all of a sudden Kiley started crying. She held out her hand and her finger was dripping with blood. It had gotten slammed in the door. We quickly wrapped her finger up and ran the other two kids over to the neighbors house and raced up to Urgent Care. They looked at it and said, "I don't think it needs to be amputated" and Mikey and I almost lost it. They couldn't help us there so they sent us to Children's. They already had our info in the system from Urgent Care so the admission process was pretty quick. I felt so bad for how much pain Kiley was in. She seriously has the highest pain tolerance out of anyone I know. People kept coming in and taking the bandage off and putting it back on. They had to do xrays before they could determine how to sew her finger back up. Once they confirmed nothing was broken they decided to give her "gas" during the procedure. Once they put the numbing cream on her finger before the procedure she was totally fine. Kiley has been in and out of the hospital and surgeries so many times because of her disability and I felt so bad that we were there because of something that could have been prevented. Needless to say, this was a huge lesson learned for all of us and we do not even close doors in our house anymore, much less slam them.
Getting xrays.
I held her during the entire procedure and watched Women's Olympic Gymnastics on TV. Quite memorable.
They put a hard cast around the fingers and then did a soft cast to keep her fingers straight and from messing with the stitches.
We finally got home around 11pm. It was a long, emotional and exhausting night. Mikey went in the bathroom to see what had happened and her finger actually got caught in the hinge side of the door. It literally left a dent in the door frame. She is one tough cookie. We obviously had to cancel her MRI that was scheduled for the next day.
I thought she would have had a hard time sleeping in the cast but she was out. She adjusted to the cast so well.
The next day, Aunt Katie called to check on Kiley and then she called in pizza for dinner for us. It was so sweet and very much appreciated!!
So Mikey decided to be Super Dad and offered to take Kiley to get her cast off and her stitches out of her finger. The before picture.
Mikey said it was awful. Once they got the cast off, they began taking the stitches out and her skin had grown over one of the stitches. Oh, and they gave her her flu shot while she was there. Poor Kiley and poor Daddie...The after picture...
She favored her pinky for about a week and now she is as good as new!
Also, over the Summer, Kiley started having problems with her eyes. Her right eye started turning in, so I took her to a friend who is an Optometrist. He did not have any answers for why it would have all of a sudden started turning in and recommended that we see an Ophthalmologist. He did say that the astigmatism in her right eye had gotten worse and that she did need glasses. Kiley liked the cool glasses that she got to wear after her eyes were dilated.
We finally got into the Opthamologist and she thinks that since the right eye had gotten worse the left eye was over compensating so the brain shut the right eye down. She prescribed glasses and recommended that we patch her left eye 2 hours per day to help strengthen the right eye. She is hoping this helps and that they don't have to correct it surgically. So we took Kiley to get her first pair of glasses. Holy Cow, glasses are expensive, but she sure looks cute. We are still letting her adjust to the glasses before we start the patching process.
So we finally got her in for her MRI and the process was surprisingly pleasant. It was scary to sedate her, but as soon as she woke up, she was totally fine. Usually she wakes up from a surgery and is in pain, so it was a much better experience. We were right there when she woke up.
The neurologist called with the results. She first said that she didn't see anything in particular that was causing the seizures which we expected. We know that it is her syndrome that is causing them. She also said that Kiley has little cysts all over the back of her brain. This totally caught us off guard and we had a million questions. Basically we do not know if she was born with them or when they appeared. They are not big enough to take any action at this point so it is something we have to watch. This means we will continue to get periodic MRI's to monitor the size and the amount of them. Worse case scenario is that she would have to have surgery to remove them and we pray that it doesn't come to that.
Poor Kiley had a rough Summer, but she is one tough little girl. On the bright side, she attended Extended School Year (ESY) this summer and it really help her get through the Summer. She is talking so much more and can follow directions. I think I already posted about how well she is eating. She is our super special little girl and we wouldn't trade her for the world.
1 comment:
Oh sweet Kiley -I'm so glad you wrote this post to update everyone because I always hate to ask. She definitely had a rough summer but she always has the sweetest smile & you would never know what all she has been through :)
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