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