Kylie's Shunt Update

hello friends and family,
I am new to this blogging world, but i figured it was a good way to keep everyone up to date in our crazy world.
Quick recap of Kylie's condition... She was struggling in school last year to see the board. Her teacher (We are so thankful for Leander ISD and their amazing teachers, Mrs. Bizzell thank you for being so proactive and trusting your instinct with our baby, you will never understand just how much you mean to us!)let us know immediately and we scheduled an eye exam. The amazing eye Dr. (Jodie West in Leander) was proactive and saw Kylie had some swelling of the optic nerve, called Papilledema. She sent us to Dr. Martinez at Austin Retina. They found that over the 2 days we waiting to see him her Papilledema had worsen alot! So he explained this comes from pressure in the brain and told us she may have a brain tumor. We were sent to Dell Children's for MRI. Well it was clear, PRAISE GOD! But we had to figure out what was causing it. So they explained a rare condition called Pseudo Tumor Cerebra or intracranial hypertension. This condition is mostly in obese woman of child bearing age, or teens who take Accutane. Kylie doesn't fit ANY criteria for the condition. This was diagnosed by spinal tap. It is where your brain believes you have a tumor but you don't so it stores/produces too much spinal fluid causing high pressure in the brain. She was diagnosed with the condition and been treated with 8 taps and a medication called Diamox for a year now. Over the last 2 months we have seen a steady decrease in her, she feels worse and is servely struggling in school, and lost her sparkle in her eyes. We had a tap on Oct 2 with a very high pressure of 45 (normal is 8-10%) The Dr said after a year of med her taps should not be getting higher, thus means the meds are not working anymore or she is resistant to them. SO we need to take the next step. We meet with the neurosurgeon on Monday the 12th of October and he scheduled surgery the following day! WOW what a crazy, scary week. we are hopeful that this will restore our baby girls sparkle in her eyes! The shunt will drain the fluid off the brain on a constant basis. It will drain the spinal/cerebral fluid in to the abdominal wall. She will continue life as normal with the shunt.

Kylie has a lumbar perinatal shunt put in on Tue the 13th last week. The surgery went well and the Dr felt very comfortable with the outcome. She did well on Tue and wen. Then wen night she stopped eating and became very grumpy. Then she started vomiting all night. On Thursday morning the Dr came in and we thought maybe it was anesthesia so we proceed with the day and it only got worse! She just plain refused food and could not stop vomiting, which is ruff with stitches in tummy and in back. Thursday she was sick all day and all night so Friday we took her off any narcotics to see if maybe that was it. Nope! Still sick .... On Friday night the absolute worse thing ever happened. I was gone to get Joshua ready for his show on Saturday, my mom had came to see Kylie. I walked in at 9pm to my mom and Josh sitting at her bedside with her screaming her legs hurt. She was shaking and throwing her legs around. with much med on board and us trying to calm her this lasted well over an hour! She had taking enough med to put an elephant to sleep and she was still uncontrollable. When she did fall asleep her legs where still shaking. the nurse was very concerned and stood at the bedside for hours with us. The surgeon was paged and they called out some high powered steroids, at this point we did know if her spine was leaking or what! The Dr arrived the next morning and said she has Chemical Meningitis. It is where the spinal fluid is swelling and cause the nerves to freak out. this is caused from her body trying to reject the shunt. It causes serve stomach pain, vomiting, and nerve problem (legs). The treatment for it is high, Strong, doses of steroids for approx 2-3 weeks. It is not rare but uncommon the Dr said. So she is out of school for 4-6 weeks now when we thought she could go back today. She has to stay healthy since the steroids will lower her immunity. She would love to see everyone but right now she needs to stay healthy. So please if you would like to see her make sure you and your family are healthy and where clothes here that where not wore to school. The Dr said that's a big thing for Joshua to change as soon as he gets home so he doesn't carry any germs in to her from school. She loves cards and stuff also. I am constantly letting her know when people call, or text to check on her. She wants to send thank you card to all of you but it will take her awhile to get them done, thanks for being patient. Right now she has to lay flat for up to 2 weeks with short times she can be upright due the the change in pressure in her brain. When she went in to surgery her pressure was around 80-100 normal for her should be 8-10% so she is experiencing extreme headaches right now due to the change in pressure. The Dr said it is low pressure headaches (they r worse than high pressure) but her body will eventually get used to her pressure being lower. Who knows how long she has been living with high pressure and her body will have to adjust to the low now. The shunt will keep her between 8-10%. I'm thankful to all friends and family that have helped, offered, and most of all prayed for us. You can send anything to her at 202 Doefield Dr Cedar Park TX 78613. I will keep this updates so please check in and see the progress we know she will be making!!

Thanks for caring about our baby,
Josh & Karli Reagan

"be still and KNOW that i am God!!"