she is in surgery

hello all,
Kylie went back in the OR @ 11:30. Surgery is scheduled for 1-2 hours. The surgeon said it could be faster. She is prob. getting a new shunt. Unless the dr sees a reason it is not working and can fix a part.

Please pray for her as she is very discouraged. She wants to get better. Please pray for her attitude towards the adversity she is facing.

We will update after surgery.

Thanks,
Karli & Josh

Update on Kylie

Hello Friends and Family,
A few weeks ago Kylie's headaches became worse, but she keep on. I could tell we had an issue but we were keeping positive. Last weekend Josh and I noticed a swelling mussy mass under her shunt. We were keeping an eye in it, through the week it got bigger. The shunt scar was starting to kinda sink in and the swelling was worse. Then also the reservoir part of the shunt started sticking out. I know this is kinda hard to understand but it is the best i can explain, all the fellow IHers prob understand. So this weekend she became worse, The Dr said to come in to er last night for evaluation so we did. They immediately admitted her for the swelling looking like a possible leak. She is scheduled to go back any minute to surgery, the r doing a nuclear dye test to test function of shunt and also a tap to check pressure. Then we will go from there. Also the optho reports she is having optic nerve leakage.

So at this point we don't know anything but the symptoms.. I will update as soon as i know more info. Or i will con my sister into doing it again. :) thanks for keeping up w the strongest little girl in the world. and an amazing little bro that ALWAYS rolls w the flow.

Keeping Faith,
The Reagan's

P.S.- u can go to the dell web site and send cards for free link is below. She loves getting the cards send as many as u want. Also u can send stuff from gift shop but the cards r free.
Room 335

http://www.dellchildrens.net/patient_get_well_cards

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DR UPDATE......

Okay, Dr. Lee Just came in and said it worried him to c all of Kylie symptoms of how she feels going down when after surgery we did see improvement for a few days. He words where you have a kiddo that improves after surgery and then dips down hill you start looking. I asked looking for.. he said issues or ruling them out!! But he said he was going to check the shunt tonight, scan and x-ray. The asst said there is a good chance we could get results tonight from scans. For placement and setting then if those r

OK we might do dye test tomorrow.

This is the plan for right now.

Sorry i don't have anymore info for u guys.

Karli Reagan

well, well, well we r still at hospital!

Hello friends & family,

Kylie is still here at dell, and so are we we didn't abandon her YET!! We can truly say we don't know whats going on. She is still not "bouncing back" She is not eating, drinking, or potty like she should. Her head is still hurting when she gets up. She has become VERY AGGRAVATED!!! Kylie is normally a very sweet little girl. We have truly thought about an exorcism to stop the behavior. We cant explain it or understand it. To all my IHer's out there i am reading this is normal when pressure is high? But how? we just had her shunt fixed. i have asked if she is not better. to repeat the dye test to recheck the shunt, idk if this is the best idea but idk what else to do. we are lost for any ideas. So if you have some please send ASAP!!!! Before Mommy and daddy lose it! We have her on Boost for nutrition and have restarted all iv fluids (fully) she is down 7 pounds. If there is anyone that would like to keep the blog up please let me know and i will call u with info but i have no time !! she is still up and almost puking so who knows how long we will b up but i will NEVER QUIT FIGHTING!!!!! I am truly blessed to be right here with her at all times and i have a baby to hold!! So please understand i am not complaining!! I am blessed and so thankful, but to be honest I'm frustrated!! Good night - i will try to update after cing Dr tomorrow.

May God lead your path!

The Reagan's

Josh is at home with Joshua tonight life is SOOOO good!!

4-19-10

good evening all...
well today has been a roller coaster!! Kylie has been pretty sick today. She was able to get up and go pick out a few movies and pick 5 books for her brother. Then we made it to gift shop and she got to get him a gift. She is having a hard time missing daddy and bubba. She has cried for both of them. I think both will B able to get here tomorrow.

Ms. Jessica came and jumped my broke down car !! Thanks !!

Mrs. Kristi Felty and Ally came with coffee to hang out. That was a nice surprise. Also she got to be here for the Dr's. Which was so nice to have another set of ears.

Dr.George, had said he will think over all the questions i have and meet with us tomorrow. But he was worried about her kidneys. as i stated her urine earlier and since then only one more time off 200 ml. so he ordered a bladder scan after the urination her bladder still held 168 ml of fluid. so he has order and kidney scan @ 7am in the morning. This test will show if the dye damaged her kidneys. They have upped her iv back to 75. from 10. Valerie the PA we don't care for was in here today while Dr George went over things and u could tell he was very disappointed in the way she had been treating us. I have asked for a meeting with the neuro, neurosurgeon and Josh and I. I plan on addressing all the issues we have been having and the lack of care they have given us. Also Dr. George said Kylie will not leave until we r sure all is ok and her shunt is functioning properly.

The diagnoses of chemical meningitis has been confirmed and she is being treating for it.

idk what else, except I AM TIRED !! AND MORE THAN TIRED I MISS MY FAMILY BEING TOGETHER!!

Kylie is still on max dose of morphine, toradol, zofrain, and bendryl. so please keep praying we r ready for this to be over.

Thanks for everything -
Karli Reagan :)
Keepin the faith ( trying too)