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... :(
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