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)

update on surgery and the night thus far..

Kylie's surgery went well it took over 1 hour. they made the incision in the tummy and removed the tube that drains the cfs (cerebral spinal fluid). The tube was either clogged, blocked or something. The shunt was function great. They repeated the dye test to ensure flow and it was working properly. She woke up great from the anisthisa.(praise GOD) We got back to the room and she had a pretty good few hours, then the pain was just uncontrollable. she is on a morphine drip and pump. But this still was not enough, they double her dose and it seems to help but not take the pain away. Dr said this will be a tough recovery.

They have requested at this point NO school or actives for a MINIMUM of 2 weeks when they came in tonight and her pain like it is he said we r looking at prob 2-4 weeks. Please keep this in your prayers. I will go into more detail after i talk to school tomorrow.

So then my mom brought us some food around 3 we ate and all took a nap to Josh waking up vomiting. So we quickly sent him away!!! He is home but he is very sad and upset he feels like a failure for not being here. Please text or call and lift him please as he is very down, also pray for our little man as one of my family members will be taking him to school tomorrow and idk what is in his bag or anything so momma is worried.

Tonight about 10 Kylie started feeling a very stick neck, low grade temp, and leg spams, also has NO feeling in feet. Please ask and beg to God this is not the symptoms chemical meningitis again. she did get this the 1st shunt surgery and it means hard antibiotics and a longer stay here! YUCK!!

Tomorrow we will be under the care of Dr George, and my fav PA Valerie, please pray for the words i say as i feel some strong feels about the PA. I need to stay positive for Kylie but address the problem so no other child is every treated the way my baby was. And being here alone is going to be hard to arrange a time to talk wo having her with me.

She cant go home on morphine so our goals are weaning off morphine to pills
walking to "get things moving"

Thanks for taking the time to read this and keeping us in your prayers .....

Karli Reagan and Josh Reagan

Sorry for such a late update but wow i cant get this all done!

please remember you can send her free cards to room 335 http://www.dellchildrens.net/patient_get_well_cards

also she has not had very many visitors if u would like to come you are more than welcome just call and i will let you know if it a good time on that note the port to charge my phone is broken so anyone with a blackberry is more than welcome so i can charge my battery in your phone while your here! you can call 512-788-6437 or text or call 512-324-0335 for our room

Here we go again...

Okay to start, I cant write anything like my sister so all that r looking for grammar and etiquette mistakes, get a note bad u will need it. My poor sis is sick and by far the got the Mrs. etiquette award in our family :) I am just a good ole' redneck !! o and for all who know I went to LEANDER!! haha OK back to the serious stuff.

I am doing this one a little different... Thanks for reading and supporting our family!

you can send FREE cards to Kylie by going to http://www.dellchildrens.net/patient_get_well_cards ROOM 335
Back to my great sister.. she is making a scrap book of all the cards you send. Send as many as u want as often as u want! She has here phone so u can text her 512-788-6437 (make sure you tell her who u r) she is very disoriented right now. She has not been awake since we checked in yesterday. Which scares me and her daddy.

Little bro is good he is hanging with his granny and popo today. I think going to home depot. OHHHHHHHHH (the Tim Allen thing from home improvement)

Here is what we know thus far:
*she was admitted for constant and extreme headaches
*vomiting
*dizzy
*very "out of it"
*extreme pain in head and eyes
*eye specialist said papilemdema had double in 8 weeks (swelling in the optic nerve)
aka - this is result of swelling in the brain.
*not "feeling" right - she is forgetting things and just not understanding simple task
*the asst to neurosurgeon said lp shunt looks very protruding? idk

PLAN:
* we ran blood work last night to check her organs to see if they can handle the nuclear dye
* waiting on results
* will go "under" to have a spinal tap and the dye injected.
* wait 4 hours to see if dye moves through shunt
*if it does idk where we go from there
* if not then we repeat scans in 4 more hours
* if dye don't move properly then we know the shunt is not working
This is where we r right now, we don't know where or what to expect...

Please pray for all of this and also for Josh, Kylie and I as we have had major issues with the asst to neurosurgeon here this weekend. I will try to keep this up .. Pray my sister is better to do it cause this has taken me all night to type, with ky and nurses.

In Christ-
Karli Reagan

All are welcome to come just call so we know to expect you. we r in need of a few things! redbull!!!!! jk