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

Idiopathic Intracranial Hypertension - "My Pain"

Nationwide Childrens Offers New Clinic for Children with Pseudotumor Cer...

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

Kylie is STILL having headaches...

Hi! It's Melissa again...I just wanted to send out a quick update on Kylie's progress. She had a rough weekend with lots of low pressure headaches and all the NOT so fun things that go along with them. She was in a lot of pain that continued through the weekend with nausea and vomiting. We have learned that the low pressure headaches are worse as far as the pain level than the high pressure headaches.

Today they saw the Neurologist for a follow up appointment. He adjusted the pressure on her shunt so that it would drain less fluid in order to keep her pressure a little higher. It will take from 24-48 hours for it to help her feel relief.

They will leave for Houston tomorrow to see a Neuro Opthomologist (forgive the spelling!) that was recommended by her Austin Doctors. They will repeat her eye exams and test her shunt.

Thank you for continuing to keep Kylie in your prayers.

-melissa callan

WE ARE REJOICING IN HIS MIRACLE!

THIS IS THE BEST NEWS I'VE BEEN BLESSED TO PASS ON IN MY ENTIRE LIFE!

Kylie went in to surgery this morning to have the new shunt put in. The doctors came out just a few minutes ago to report that the shunt Kylie has in place is working perfectly and she DOES NOT need a new shunt. He checked her pressure and it is completely normal.

Kylie has been struggling because God told her if she could endure surgery for the last shunt it would be the right one for her. She just didn't understand why He let her down. The doctor wanted to reassure that God did not let her down, it was man. I just can't put into words how our family feels right now, but shock and overwhelming relief are on the top of the list.

The doctor said Kylie would probably be able to go home tomorrow!
GOD IS GOOD ALL THE TIME!

Thank YOU ALL for continuing to cover her in prayer, and getting her on every prayer list in central texas and all the way to Missouri & Indiana. Our family is humbled and honored to have such good friends.

Very center of the Bible is Psalm 118:8, which reads (NKJV): "It is better to trust in the LORD than to put confidence in man." Psalm 117 is the shortest, Psalm 119 the longest, and 118 is the center. Sometimes God whispers. Sometimes He shouts.

Like Karli said...TODAY HE SHOUTED LOUD!

-melissa callan

Come join us for dinner with Kylie!

They have determined that Kylie's shunt has NO flow going through it. This is obviously the cause of her changes in pressure and continued decrease in vision. Tomorrow morning at 8:00 am they are going to do the surgery and as you can imagine Kylie is very anxious. She has to have an MRI tonight at 8:00 then will be fasting for surgery.

We have decided to have a get together at the Dell Children's Hospital Cafeteria at 6:30 tonight. If you can please join Kylie for dinner and cake, she would love to see everyone.

Our family is very thankful for all the prayers, notes of encouragement, ecards, and visits everyone has given to Kylie. We are so very blessed.

-melissa callan

Wednesday 2/3 noon update

Quick update on Kylie..

• This morning we got an answer about the oddity they found in one of the xrays of her spine yesterday. It was a marker they used and was nothing alarming after all.
• Her kidney function has improved slightly.
• Kylie is in having the scans now and we aren't sure how long they will take.

Thank you for your prayers and Kylie LOVES all the cards her friends are sending...KEEP 'EM COMING! :)

-melissa callan

2 am update...

Thanks for all who r following and praying along with us. We know your hearts are breaking along with ours but WE WILL PRAISE HIM IN THIS STORM!!!

We did get results from the testing today, the results are her opening pressure was 26-29 normal is 5-15. Her shunt setting is 15 so this was our 1st indication something was wrong with the shunt. She was a trooper and made it through all day of surgery and test, then some more test! The dr came in this evening and said that the nuclear dye they injected into her spine didn't flow through the shunt, meaning something is wrong with the shunt. This test is not complete as she has to do more scans in the morning to see if the dye has moved anymore. From here the surgeon said we will be doing a shunt "revision" This means either replacing the part or tube that is not working. For example a tube may be clogged or something mechanical may need to b replaced, and or a new shunt all together. He also stated there are more and different shunt to consider. Which we will discuss once the data from the test is complete. There was one other alarming thing one the scan that the surgeon or radiologist was not sure what is was so they will look further into in in the scan in the morning. We don't have a time for the scans to start. Today we started around 8 am. We have not told Kylie for sure that she will have to get a new shunt yet. The dr also said we will do the surgery as soon as possible. I know this is not alot of answers but it is all we know at this point. we are sorry we cant answer our phones but it is easier to just get the info out at once.

Here is a list of our prayer request:
-discernment for the scans
-clear answer on problem of they see of concern on the scan
-peace, comfort, understanding for our family and KYLIE!!
-for this shunt to work
-for the pain to be taken away
-Joshua(in general, as once again he is passed around while we are caring for Kylie)
-rest to be fulfilling, weather we get 1, 2, or 3 hours
-Kylie's legs to stop spasming
-her waking up from surgery to be better (not Linda Blair)
-our finances as another surgery might kill us!
-also the chance for us to b positive and Gods witnesses with every word we speak

Walking by Faith,
Josh & Karli Reagan

Also Kylie wants to make a bunch of braclets to donate to the intracranial foundaton to raise money for research. If you have anything laying around we would love to have it to help raise $ to find a cure to fight this condition!! We have some things, but we need lots of help from friends to help us make them!!

one more thing please send the free cards from dell to kylie room 211. They r free and make her soooo happy!! here is the link..

http://www.dellchildrens.net/patient_get_well_cards

3:00 Tuesday 2/2

Kylie is out of the operating room and back in her room for a while until she has to go back for the remainder of testing. Kylie is very agitated and upset with the world, who can blame her? She doesn't want to go back, yet again who can blame her? She wants to be left alone...not going to repeat it but you know!

They say it is unsafe to put her under again, so she will have to be awake for the rest of the testing. Please pray for her to calm down and let peace surround her. Let her feel the comfort of His arms. When Kylie is finished, or we have any results I'll update again.

-melissa callan

Kylie is still in surgery...1:00 tuesday 2/2

Karli just spoke with the doctor, he said the spinal tap went well and he is finished with his part of the procedure. Kylie is fast asleep and her vitals are good. There are still no results from the testing.

Kylie will stay in the operating room until the testing is complete which could be several more hours. Please continue to pray for strength, guidance, and wisdom...and to keep Kylie safe during this difficult day.

-melissa callan
.

Tuesday morning update 2/2/10

Hi! It's melissa with a quick update and prayer request. This morning at 11:00 they took Kylie back for a spinal tap and to inject dye into her spine for some testing. They will monitor the dye and how the shunt drains it to determine if the shunt is working properly. She will be put "under" during the beginning of the procedure, and then after some time will be awake as the testing will possibly up to 6 hours. Just a side note...if the test takes a long time that means that the shunt is working in some capacity. The doc said that the shunt is NOT working he will know in 15 minutes.

They are doing many tests and we are praying for CLEAR answers. There are numerous risks involved in these procedures today, anesthesia, opening her spine AGAIN, the dye itself, are the big ones. Please pray for the doctors and nurses to guide their hands, and for Kylie to be safe during this difficult day. Karli and Josh are by her side along with other family members.

I will update as soon as we get the call...

update on Kylie

Kylie is having a fairly good day. The ICP monitor, that was surgically inserted on Wednesday, has been taken out, due to it being pulled out of place acidentally by a nurse. The neuro surgeon came in about 30 minutes ago and I was really impressed by his honesty and willingness to help Ky get better. He said that they are going to do a test tomorrow to check if the shunt is working properly. They are going to do a spinal tap, inject dye and periodically take x-rays to watch the flow of the spinal fluid. The doctor said this will help give him the information to know what to do next. The doctor also made it clear that they are going to do whatever he ad to to make sure that Kylie's health is safe.

I am amazed at the strength and courage that Kylie has. She has such a good attitude about all this.

Please continue to pray that God will:
-guide the doctors as they do the test tomorrow
- give Josh and Karli the strength and wisdom to make the right decisions.
-keep Kylie's pain under control and levels good.
-Joshua to know that his sister is going to be okay and that he is a very loved boy.

Blessings:
Kristi Felty

Karli asked me to typed as her brain was overloaded!!

Monday 2/1/10 update in need of prayer

Good morning friends, it's Melissa...the Reagan family is in need of prayer and support to help them through this most difficult day.

To start off...KYLIE IS OK! I don't want to scare anyone!!!

Last week when doing a routine exam the nurse accidentally tugged too hard on Kylie's IPC lead. This is what was surgically placed just inside her brain to read her inter cranial pressure. All week they were getting "off the wall" readings from the monitor. As of late last week the doctor told Josh and Karli that they were going to need to consult a doc in Houston because he had "NO IDEA" why her pressure was changing so drastically.

Yesterday they met at length with the doctor and discussed a couple of options...

• injecting some dye to see if the shunt was working properly (keep in mind this is her second shunt) IT HAD BETTER BE WORKING! :)
• taking out the IPC and basically inserting a new lead to start over

As you can imagine neither of these were very popular. They really wanted to have the procedure done, stay in the hospital while the monitor collected the data..then COME HOME with some answers about how to manage Kylie's condition and to try and return to some sort of normalcy. It appears that is not going to be an option.

When I heard this news I felt devastated for my sister and Josh but especially KYLIE. She has been such a trooper. She has gone through so much and to tell a child that they just laid in a hospital bed for 6 days and all the while the monitor was not working is not an easy task. So far all the major procedures she has gone through have had to be done twice.

I always try and find the good in every situation and for this one it would have to be that they didn't just send release her and send her to follow up with the specialist in Houston. I'm thankful that they (a nurse that has been a true angel to Kylie EVERY time she's been in the hospital) discovered the monitor was pulled out. Don't get me wrong, I know we have SO MUCH to be thankful for. Every time I go up to the hospital it doesn't take a few minutes to see that very clearly. My prayer is for strength for Ky, and her family and for answers and guidance for the doctors and nurses who are overseeing her care.

As soon as they make a decision today I'll update another post.

****QUICK UPDATE****

Karli called and told us that Kylie's kidney function has been majorly compromised due to the vancomycin (antibiotic that she is allergic to) she is still having to take.

-melissa callan

It is Karli this time....

this was yesterday's post bf computer died!!

Just wanted to know we are heading out for our 1st walk and playroom time. Josh is busy at work. Kylie and I will b playing. Today she goes out for 3 - 30 min times. We r missing Joshua so so much, Kylie said she is withdrawing from his laugh!!!! Along with the post from earlier yes she is one a different floor but it is password protected, so if u want to come please get a hold of us 1st. we would truly love the company but, like when u have a baby these nurse don't mess around they will run u out!

We just have over an hour meeting with neurosurgeon asst. we have came up with many questions to ask surgeon when he comes in. So please send me any questions u think of and i will b asking. Today is where the true testing begins....

Every time Kylie is getting up her pressure is dropping in the negatives, so this data shows her shunt needs to be adjusted. I know these #'s r confusing but to take off less fluid u up the shunt # she was at 140 now we r going to 160.

Durning the 3 hour adjustment, it took 4 PA's 2 nurse's and KYLIE'S DAD & one amazing iPhone to get it to take. we finally got it !! we don't understand why it would not adjust but finally we did! after that our goal was 30 min up 3 times today. we did it -

She is still in a lot of pain and having a hard time.

we had some great visitors last night first and most of all JOSHUA!!! then Jeannie, James, Dani, the awesome Hayes gang, Ms Kristi, and Ms ally. They all came and enjoy dinner at our lovely cafe here. i hear the pizza is great (LOL....NO REALLY I AM)once back in room we had an incident as ky says and a nurse pulled the icp tube hard thinking it was another monitor. OUCH!!

so in a nut shell Kylie's pressure has went as low as negative 27 all the way up to 69! she is on a roller coaster, the pa's don't really know what to say. just keep gathering data. The dr will b in this afternoon.

I want 2 take a minute and say thanks to all sending cards, and btw she can have anything you want to send! (hint 2 my little sister amy joe- m&m's) we r in room 211 - we can have visitors BUT call cause this ward is password protected and only so many at a time.

special thanks for all who r taking time to call and come see us and also send messages - it does feel very "out of the way"

Also, Amanda Hayes and all her very special friends, i could never thanks you enough! perfect strangers BUT sisters in Christ, you goodies r great, the $ for vending machine is charming, the dinner money was helpful! But more than anything the encouraging cards notes and the prayers i can feel in my soul. I cant wait to meet you amazing people.

we will continue on testing and cing where we are..

Blessings on each of you,
Karli Reagan

After a GOOD night of rest...1/28/10

I'm happy to report that Kylie had a great LONG night of peaceful rest last night. She took some pain medicine at 6:00 yesterday evening, and then slept until 9:00 this morning. By the way....Karli and Josh were able to catch up on some much needed rest as well. Today they are rejoicing in her upbeat attitude and how good she is feeling. Karli told me this morning, "It's a glorious day. The weather may be gloomy but for us it's just perfect!"

This morning Kylie woke up hungry, so Karli went to Whataburger and got her some chicken strips. Kylie was up reading a book for school when I talked to them earlier, so all indications are that she is feeling great! Her chief complaint now is that she wants to wear her own clothes...I think those hospital gowns went out a LONG time ago!

Kylie will stay in the hospital now and the doctors will continue to gather data on her pressure. The "lead" is a thin flexible wire that is sometimes hard to see as it's white in color and blends in with the sheets. They did have to shave a small section of her hair about the size of a Christmas postage stamp. I'm really not good at describing these things, but I wanted to give everyone an idea of what she has going on.

Please continue to keep the Reagan family in your prayers, Karli and Josh are staying with Kylie and Joshua stayed last night with his cousins and Granny. Today Katie took him to school and we are going to play the rest one hour at a time. Have a blessed day!

Post Surgery Update for Kylie Sue :) Wed. Jan 27

Well it's me again...Melissa, I'm Karli's sister and I'll be updating the blog for Karli as she needs while they are in the hospital.

Kylie got out of surgery this morning with no complications. She had some side effects from anesthesia, but all in all it went well. This procedure is completely diagnostic and will help the doctors gather constant data on Kylies cerebral fluid pressure. They won't have any real "answers" for a few days. They are going to be watching her pressure to see if the pressure is high when she is having headaches and if the pressure gets high what other things are happening at the same time. A few things that they may be able to determine from this test are...

• If the shunt is working by keeping the excess fluid drained?
• What the shunt needs to be adjusted to? (the shunt in set to a # and if the pressure gets over that # then the shunt begins to drain to keep the pressure constant)
• If the shunt is working and the pressure is good but she is still having headaches, what else could be causing the headaches?

The doctor told Josh this morning that if over the next couple of days the pressure stays within normal limits then Kylie will be able to go home. At this point the doctors will have to look further into other causes of the headaches. This was WELCOME news!

We are asking for prayer for the Vancomycin (antibiotic they give her after surgery) treatments she will have over the next 24 hours. She is allergic to it and they pre treat her with benadryl, but she is still very itchy and often she has bad reactions.

When Karli called me earlier today Kylie was in quite a bit of pain. Granny left the hospital this afternoon at 3:00 and Kylie was feeling much better playing on the computer. This evening Josh said Kylie was hungry and they were going to order something for dinner. Karli is taking a nap...thankfully she's been asleep for a while!

Kylie is in IMC (intermediate care) at Dell Children's Hospital. She is in this unit only because the nurses on this particular floor at trained on reading and caring for patients with this monitor. They are in 2 central on Floor 2 Room 211.

If you are sending a card you will need to reference Room 211...she LOVES to get these cards! Click on this link....http://www.dellchildrens.net/patient_get_well_cards