After a 3 hour drive, we arrived in Syracuse.  We got there just in time for her first pre-op appt with her surgeon.  She was miserable!  I blame it on a long drive, and she had just woken up from a short nap... going to see the Dr was the last thing she wanted to do.  After that appt we had to go over to a different part of the hospital for a mtg with the anesthesiologist.  She was just as lively as can be at this appt.  That one took forever! And it wasn't even the last one!  After that mtg we had to go get a chest x-ray- which I did not think of, so was not prepared.  She did AMAZING for the x-ray- sat on the big girl table with no tears... but apparently twitched to much just as he took the picture.  So they had to do two more pictures using the one that looks like she's sitting on a bicycle seat.. she did fine until the second picture- she looked up at daddy- as she is closed in by a plastic wall all around her, arms up - and says - "daddy, come here" - which is her way of saying pick me up.  Jerry almost melted right there!

So after about 4 hours of being at the hospital for different appts, we were free.  We checked into the RMH house and then left to meet up with the D'Angelo's at the playground.  Kayla had a great time! She loves the slide.  After the playground, we went to dinner together.  Kayla hardly ate while Charlie scarfed a ton of food... and sang loudly while he did it.. it was stinkin cute- I asked Kayla to sing too, and she did, but you could hardly here her, while Charlie was as loud as could be!! :) After some dinner, we went to get ice cream.  Again, Kayla hardly ate while Charlie sat and ate his entire ice cream cone!  Kayla wouldn't sit for two seconds! We got back to the RMH around 9:30, gave Kayla some milk by 10 and she passed out in bed with Jer and I.  We didn't have the heart to put her in the crib.

First thing in the morning we went to the hospital and were greeted by some very wonderful nurses.  We walked in and they all said hi and knew Kayla's name... they were just so nice!  We put Kayla in one of her hand made hospital gowns and she ran around playing up until the time they brought her down to surgery.  She LOVED the magnetic dry erase board easel.  (that may have to be a post-op gift) :)  Jerry had to take her down as our Dr. was more comfortable with that bc of my stinkin cold!  He said she didn't cry until she had to lay down on the bed.  As soon as she was down, they put her out.  Jerry was back up with me in about 2 min!

Then we waited. And waited.  And waited. A little after 3 hours the phone call was finally for us in the waiting area!  The nurse working with our Dr. called us to let us know what was going on.  She said that everything was going just fine and that they were closing her up.  But then she said to expect about another hour and a half...WHAT?! We had no clue what was going on, and I actually anticipated it to be shorter than 3 hours... my bad!  So - we waited.  And waited.  Finally we saw our Dr. walk in.. and he assured us she was doing fine.  Then explained everything- it's quite a bit to take in really- you kinda feel lost, and feel a little stupid for asking questions when you know he's already answered that question.  So here it is... it's a lot!

4.5 hour surgery- about an hour to get the catheter in, they gave her an epidural for pain, and to get the IV in. We don't know how many times they tried to get IV in, but we do see several poke holes.  And then surgery was on.  Once they got in this is what they found-

- she had reherniated..so all that we thought, was wrong, it wasn't bc of her growth or that the patch was loosening.  she had def reherniated- the front was completely undone but the back part was still in tact.
- a portion of the large intestine had gone back up into her chest cavity... they saw that she was constipated (that I don't know how they knew)
- her spleen was stuck to something (we don't remember what but are thinking it was the patch) and they had to pull it off, and when they did it bled a little- and they put surgical glue on it and it was fine.
- they had to put stitches on her intestine (I say large, but Jer says small- we don't remember what he said) bc there were small abrasions on it.
- they took out her appendix- it was on the left side and foresaw problems in the future with that.  (ie:  if her appendix were to have issues- she'd complain of issues on the left side and no doctor would ever think that it could be her appendix bc it's supposed to be on the right side)
-they did not take out the old patch, just added a new one to it... Dr. said it was about a 2" x 3"(the new piece)

Right now she has an NG tube mainly bc of the constipation- I THINK. (to put stuff in it to flush out the poo?) She needs a little bit of oxygen- she is on about 30%- it's not a tube in her, just laying on her and blowing on her.. Dr. said he wouldn't be surprised if she needed that for a couple of days.  She also has a chest tube - :( She comes in and out right now- out mostly but you can tell anesthesia is wearing off a bit...we have heard her say "i'm ok" and answered "ok" to a question... she has shook her head no- and yes when asked a question.  She also had to be sat up a couple of times, and one time she saw stickers laying on the bed and she reached her arm up to get them, silly me thought she just wanted me... so I grabbed her hand to hold it and she weakly pushed me away- and kept reaching, I asked if she wanted stickers and she did. :) We are in the ICU at the moment- and may be for a couple days.  Dr. said this was a MAJOR surgery.

**pics to come later- I forgot my camera cord to hook into the computer at home... :(

I got a call this morning from Kayla's surgeon's office asking me if I could call them before we take off to Syracuse.  The only thing I thought to ask was if Kayla's surgery was going to be postponed.  All they could tell me is that they weren't sure.  After that phone call I was stressed out of my mind and just felt sick to my stomach.

We have already postponed her surgery once because she was sick... but we waited until the day before we had to leave to know if it was postponed for sure.  This time we are sitting here waiting to hear the day of travel.  I have been stressing about her surgery ever since we found out about it.  I know it needs to be done and stressing isn't any good, but I can't do anything else.  But the past two nights, I have not really slept, and if I did sleep, I was dreaming about her surgery.  I'm just so nervous, terrified, sad...

At the end of the work day, I couldn't take it any more and I called our Dr's nurse back.  She is sooo very sweet and didn't seem bothered by me at all.  She even gave me her personal number so I didn't have to call the office and get any random nurse.  She listened to my concerns and told me she would call me back as soon as our Dr was done with his last patient.  After an hour of waiting to hear back, I was just too crazy about the whole situation, and I called back.  And I know that they are sooo super busy, and I felt awful for calling them back but I'm a nut case right now... :( The nurse still did not seem bothered and was very helpful! She got me right through to our Dr.  The whole issue is that our Dr is having a biopsy done on his foot tonight and isn't sure he'll be able to perform surgery on Friday.  He told me he'd have his nurse call me first thing in the morning to let me know if we should head down or not.  And he knows that we really want him to do the surgery-

So with that huge long story you probably didn't care to read... we are not sure if we are going to Syracuse tomorrow or not.  Our Dr did mention maybe having to postpone til Monday or Tuesday- could be Thursday or it could still be this Friday.  We just aren't sure what's happening yet.  Which is so hard!  I just need her to have the surgery so I can stop thinking/stressing and stop being a nut case and help get her through the recovery.

However, this morning before the phone call, Danielle, a great friend, surprised me with a great gift that my co-workers in Banford contributed to.  So very kind!!!  So thank you Banford!  Then a friend, Missy Lawrence, came into my room and gave me a gift to give to Kayla!  Kayla won't get them until after her surgery as one of the gifts had stickers in it... she LOVES stickers. :) So thank you Missy!  <3 You are too sweet!!

Even tho I think she is working harder to breathe, she can still run "so fast".  She had a great time running back and forth saying "I so fast... so fast"

Kayla is doing much better but not well enough for her surgery on Thursday.  The surgeon's office read over our pediatricians notes on Kayla's last two visits, and decided it was best to postpone the surgery a week.  She has been rescheduled for Friday, May 13.  (I know.. Friday the 13th... UGH!) However, my husbands logic is this:  Kayla... unlucky for having to have surgery AGAIN, Friday the 13th... unlucky day, two negatives equal a positive... so Kayla's surgery is going to go amazingly well and she will recover better and stronger than ever! :)

It will be hard to wait another week for surgery- the anticipation is killing me!  I'm stressed about absolutely everything and anything!  I stress about what to bring, my lesson plans, Kayla hating me when she wakes up, Kayla being disappointed that it's ME who is staying with her at the hospital (daddy has to work :( ), Kayla crying with the stitches (it's freaks me out), the pain she'll be in, her not wanting to sit still, bowel obstruction, reflux returning, Kayla getting even WORSE at eating (ugh), Lily forgetting who I am, money, I mean everything... it's been a stressful month, and another week has been added on.  My co-workers, friends and family must hate me by now.. I've got to be the most annoying, grumpy person ever.  I'm sorry ... :-/

Anyway- so for those who have been wondering, Kayla is doing much better. Just not well enough for such a procedure.  I'm very thankful that they did not postpone longer than a week, and I'm also thankful it was postponed as now I have two days I get off from work w/o having to take them off.  I'm already taking 11 days, 10 w/o pay... and then when I would be able to return, we have that friday and monday off. :) I am also thankful for the new date because her Nina and Papa can come visit now. But a little sad because that week would have been the recovery week...

Staying positive- and trying not to stress over it all, but it's been hard.