We are home.

We got home at about 3pm Friday afternoon.  It's been interesting...
This surgery was a little harder for all of us.  Not that the first one wasn't hard, but it was such a surprise, that it didn't all sink in for us.

She was in a lot more pain it seemed, and wasn't anywhere close to her normal self.  She didn't like talking to anyone that much, when before she would take the nurse's ears off.

She didn't want to wear the hospital gown or her pajamas at all.  I don't blame her though.  :)

This time we didn't have any visitors, and last time we seemed to always have someone coming in, and that helped boost Bailey's morale, and  make her happier faster.  It was just the 3 of us the whole time.  Kind of different.  Serious bonding time though.  That is probably why I haven't put any pictures up on here.  I didn't take that many.  I only took 5 on my camera.  The rest were on my phone and I uploaded those on my facebook page.

She's doing fine right now, still not eating that much, but she's drinking.  I brought her mattress downstairs so we're camping out in the family room, and she's just watching some of her shows, and resting.

After Surgery

Well, we survived the early morning drive IN THE DARK!  Bailey was just really quiet and kind of dazed off the whole time.  Luckily we knew the nurse checking her in (weight check and such).  But it was still a long wait after all of that.  They gave her some calming medicine (Versed) before the anesthesiologist took her back.  It was a very different experience this time.  Last time Bai was so much more calm, and telling us jokes, and tellign the anesthesiologist jokes.  She was just very uneasy, and probably knew more of what was going on this time.  Estimated time they told us was 3 hours.  EEK.  I think it took shorter than that, but I sorta lost track of time, which was probably good.  I kept busy watching some TV shows on HULU, and playing on Facebook on my phone.  I loved reading all the messages from friends, and friends of friends.  :)

The plastic surgeon came back to talk to us after it was all over, and said he put in some plates and screws with the bone he put in, that will dissolve in a year...wow never heard of that one!  Very interesting.  He also said she won't have to go to ICU.  That was exciting for us.  :)

The best news of all, is that if her drain that she has (you can see it in the picture), can come out tomorrow, and if she's walking/eating...that she can come home tomorrow!!!  :)

The swelling we noticed last week.  They realized was her brain oozing out.  Seriously?!  EEK!  Her neuro surgeon was kinda funny when he told us, but seriously...EEK!!!  Such a nice guy though.

She must've been feeling a little nauseated casue she would sit up and say she needed to throw up.  She is still sleeping, and I should probably take a nap, but we don't have a nice lay down bed here.  LAME!  Oh well.  Hopefully, we won't be here long....Hopefully.

Tomorrow's Surgery

I just got the call from Primary's to let us know when to come in tomorrow.

We need to go in today to get some lab work done.  Bailey's favorite.  Poor kiddo.

Tomorrow we need to be at the hospital at 6:45, and surgery will be at around 8:15 AM.  We will be going to the PICU unit immediately after surgery.  I will update as soon as I can, probably while she's sleeping...

She's super nervous, and had a mini-breakdown today.  So we're just trying to keep our minds off of it all.  We're hoping to go golfing today, but the weather isn't cooperating. :(

I'm super nervous and super emotional over the whole thing.  Can't wait to come home.  :)

Thanks for the prayers, love and support :)

Sorry...

Sorry I didn't update y'all.  I haven't been so good on that.  Been dealing with a migraine all week.

Bailey went in to the doc, she had a CT scan.  No cause for alarm, surgery date is still Wednesday.  I am super nervous for that.

Anywho, doctor said it was some brain fluid leaking (CSF-I believe is what he kept calling it).  And the size will go up and down.  I've noticed when she's more active the size goes up.  She's supposed to lay with it elevated, but she doesn't lay still at all...She is ALL over the place.  She's a wild kid.

The nurse/helper lady is SOO nice in Dr. Walker's office.  She gave Bailey a little purse with a bunch of pennies in it, to make wishes in the wishing well in front of the hospital.  She also remembers how nervous Bailey is, and calms her, and lets her pick her room.  Maybe that's how she is with all the patients, but still, I appreciate it just the same.  She didn't get to see Bonnie in Radiology, so Bailey was super duper nervous, and moved  a whole lot during the Scan, but it was still okay.  As soon as her name was called and she saw it wasn't Bonnie, she freaked out.  Poor thing.

She still says that she doesn't love Dr. Walker though...She's so funny.  I love her so much.

Surprise Visit...

We're making a surprise/emergency visit to Primary Children's Today...

Her scheduled surgery is next wednesday, but we noticed some swelling and its super soft, in a super squishy way...so the docs want to check it out.

Dave called the hospital last nite, and the resident he talked to, remembered her story and all about her, kinda cool...but that resident said it could be leaking brain fluid, so it may mean time to move up the surgery or just let it go, and gave us some thigns to watch for.  UGH, i hate this type of thing.

Sorry or all the typos...I'm just in a rush.  10 AM is not my best time for typing a blog. :)

Forgot...

We were talking with Dr. Walker about the tumor, since we finally figured out what it was and stuff.

I asked if he knew anything more about it than what I was told. He said, they are mostly found in the spine, but he hasn't seen one in the brain/skull area in 15-20 years. The ones that he's seen in the spine are very painful, so he was amazed that Bailey wasn't in pain. He was also surprised that because it was so rare to see in the brain/skull area that it was benign and not malignant.

Let me just say, I'm soooo thankful for the many prayers and thoughts that my little girl received and that we are where we are today. All I could keep saying was Wow...

Today's Appointment

Wow, what a day!

Bailey as usual, got all dressed up for appointment. She's so funny about things like that. She started to get a little nervous about it as we got closer. She said, "Now nobody's going to poke me right? And if they want to, I can just say no thank you right?"

We had to fill out new patient information when we got to Dr. Walkers office, which took forever...but there wasn't much waiting in the room once we got called back. I love that hospital every one is so nice, and its all kid friendly. Its great.

Dr. Walker checked out her scar, talked to her a little bit, she was so shy! I figured she'd be all talkative, want to sing and dance...I mean, its Bailey!!!

He then gave us the options for what we could do as far as the bone graft. Originally, he had said they were going to do some sort of titanium in there. I guess they've changed their mind on that one. He said they could pull some from the back of her skull, from her rib, or do a bone donor. He stated that since she's so young that the best option might be the donor bone. They said it'll take a few weeks to order that. He also said that her bone and body should accept it just fine, and it should attach and grow with her.

He then called in the plastic surgeon, to check it out. Bai was very unhappy at this point, and would barely let him look at it/touch it. He ordered a 3D Ct scan, to get the correct measurement of what size bone to get. So, we got to go visit Medical Imaging. A place we visited 6 times when we were there in July.

Our favorite Radiology Tech was there....Bonnie! Bailey remembered her, and Bonnie remembered her, and Bailey was so good, and laid still. I'm sure if it was any other Tech in there, it would've been a fight. So glad it was Bonnie. Of course she got a little prize afterwards...

After the CT, we went upstairs to see if our favorite nurse was there (Cassie). She was on Lunch, but she's so sweet, she came out to talk to us. I asked if we could request her, and she said yes...if it could all work out. haha so I hope we can get her when we go!!! Some nurses you click with, and some ya don't. Bailey was so shy around her, but it was nice to be able to tell Cassie that the tumor was benign. :)

So her surgery is scheduled for October 6th, and the day before she'll have to have some blood work done-which Bai will NOT be happy about. I'm so happy to finally have a closure date to this, and let Bailey return to her normal life, and not have to be SOO careful. But, I'm still going to be that over-protective momma.