Happy Sweet 16 Kaley Bear !

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I seriously can’t believe my little girl turned 16 today.  Time sure flies by so fast and before I know it she will be moving out and starting a life of her own (ok I just teared up thinking about that).  We had an amazing day today and she still has a bunch of friends that are spending the night so my day is not even over yet.  It was just so great seeing her laughing with all her friends all day because lately she has been in a funk being stuck at home all the time.

As most of you know, this past year has been a complete whirlwind and I am really looking forward to a less chaotic year ahead (at least I hope so).  She goes for another test on Monday to see if she can have her final surgery and if the test comes back that everything is ok, we will be heading back to the hospital for hopefully her last surgery.  She has been through so much and I just really hope the worst is behind us !!!

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FYI: The CVS and Walgreens matchups will have to get done tomorrow because I am completely wiped out and we haven’t even made dinner yet (she wanted to do a “Make Your Own Sushi Night”).

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Now Back to the Deals + Update on Kaley

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Sorry I haven’t been online all morning, Kaley had a Dr appointment.  Some of you have been asking how she is doing so here is an update on her…

On Feb 14th she had a “J-Pouch” surgery which basically made a pouch out of her intestines so that she would be able to get rid of her ostomy in the next surgery.  On Feb 19th they did a contrast study to see if it had healed enough to reconnect everything and get rid of the ostomy but sadly there was still a small area that would leak if reconnected so we have to wait another 2 or 3 weeks to do the contrast study again.

Since she has been super tired all the time they decided to do some bloodwork today to see if she is deficient in any vitamins like B12.  I hope they can figure it out because all she wants to do is lay around and do nothing all day :(

Thanks for all the continued support and prayers and emails that have been sent.  It means the world to us both !

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Latest Update on Kaley

(sorry no pics today)

Well today has not been fun, but she is progressing.  They took the epidural out and started her on both IV pain meds and oral pain meds but it doesn’t cut enough of the pain when she has to move.  They also took the catheter out so she had to get out of bed to use the restroom which was excruciating for her.  She has a drain in her abdomen right now which is stitched into her skin so anytime anyone bumps it, she screams.  Needless to say, today contained a TON of tears :(

The good news is that eating is going well and her intestines are working fine.  Also we got to move to the regular pediatric floor a few hours ago where all her favorite nurses are so hopefully tomorrow she will be in better spirits seeing her “nurse friends”.

They are thinking she/we will be able to go home on Monday (fingers crossed).

**I did get to see Kyle for a little bit today but Kaley was so miserable that my mom decided to not stay long and took him back home.

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Update on Kaley’s Surgery Today

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The surgery went really well and they decided to do a continuous epidural for pain so she is talking and feeling no pain at all right now.  Since she has the epidural, she has to stay in the ICU for a day or so which is totally different than the regular pediatric floor.  There are so many gadgets and cameras pointed at her at all times.   LOL  She is even allowed to have clear liquids already so that made her totally happy !!!

Thanks to everyone for all your prayer and positive vibes and emails and comments… it means the world to both of us.

HAPPY VALENTINE’S DAY EVERYONE !!!

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Please Keep Kaley in Your Thoughts and Prayers

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Kaley’s last “real meal” before surgery – SUSHI

Kaley is scheduled for surgery at 10:15 am tomorrow (2/14) so if you could please send some prayers and positive thoughts out for her I would appreciate it !!!

The surgeon said the surgery will last 2.5 to 4 hours and is actually more complicated than heart surgery.  It has a complication rate of 50-70% so I am just a tad FREAKED OUT to say the least.  Recovery time is supposed to only be 5-7 days so I really hope she does better this time than she has in the past after surgery.  Both her GI Dr and the surgeon said that it should be much better this time since she is going into it healthy and not totally sick like the last 2 times.

A big thank you in advance !!!

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What a RollerCoaster Ride

I hadn’t posted much about our crazy week but now that I THINK its over, I can tell you what has been going on….

On Tuesday we met with a surgeon to talk about Kaley’s upcoming surgery and set a date for Feb 14th (yes surgery on Valentine’s Day… NOT FUN but glad to be getting closer to all this being over).   The next day Kaley was in a TON of pain so we went to see her GI Dr who thought it might be pancreatitis and she was admitted into the hospital.  After a few days of not eating and drinking, Kaley was pain-free but her bloodwork was showing some inflammation was somewhere in her body and they wanted to do more tests.  We had reservations at the Nick Hotel for the weekend so I begged them to let us go and I would come back for more tests on Monday or if she felt any pain again we would come back.  They ended up letting us go around 6 pm on Friday and we headed to the Nick Hotel to check in (a review post will be coming soon).  We had a blast Friday night but the next morning Kaley woke  up with a huge hard lump near her incision site.  I was kinda freaked out that it got so big so fast so I emailed her GI dr who said to come back into the hospital.  We checked in and they did a CT scan to make sure it wasn’t a hernia.  Thankfully it looks like it is just an infection and they gave her a dose of IV antibiotics and a script for a super strong antibiotic that she will take for the next 10 days.

We got back home a bit ago but needless to say, my posts have been scarce due to all the events that have gone on.  I plan to get totally caught up later tonight though.

**and the good news is, her surgery date SHOULDN”T be affected by all of this (fingers crossed)

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Sorry for the Lack of Deals Tonight

I have a good reason for not posting much tonight… I got to go see my talented son play trumpet at his school band concert while my mom stayed with Kaley in the hospital.  The smile on his face when he saw me there watching him was priceless.  I can’t wait til we can get back home and be together again !!!

Also, Kaley is doing better and today things started moving through her again.  Fingers crossed things will continue to go well :)  They need to wean her off the TPN before we can go and I am not sure how long that will take but I am HOPING we will be out by this weekend !!!

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Making Paper Snowflakes + Update on Kaley

Last night Kaley and I were watching ELF and it gave me the idea to fill her hospital room ceiling with paper snowflakes to get her in the holiday mood and after searching tons of sites, I found this really cool website HERE to help me (because if you could see the first few I made on my own, you would die laughing).

And for those following Kaley’s hospital stay… sadly things took a turn for the worse late Friday afternoon after I posted her update and nothing was moving through her intestines at all.  They decided to put in a PICC line again yesterday so that they could get some nutrition into her since she hadn’t eaten anything since Thanksgiving.  She is in a bit of pain so they have her on a rotation of morphine and toridol (they are rotating to try to minimalize the side of effects of each med).  They want her to get up and walk a lot to get things moving but the pain makes her want to stay in bed.  She is being very stubborn.  Thankfully, right as I was typing this I went to check on her and her ostomy bag was full of fluid so things are FINALLY starting to move through her intestines again.  This is a great sign.  She has lots of friends (and her new boy friend) coming today to visit her so that should really pick up her spirits :)

My Best Snowflakes

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Post Surgery Update on Kaley

Everything went great and they removed all the adhesions.  We are back up in the room and she is just chatting away like she didn’t even have surgery.  They did a block on her abdomin so she won’t feel anything around the incision for about 18 hours.  She is even allowed to have liquids already so we should be out of her MUCH sooner than her last surgery.

Thanks to everyone who prayed for her surgery to go well :)

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