Kaley (post surgery) - out of bed today
Doesn’t she look thrilled that I am taking a pic?!?!
I guess I better write an update post since I am getting lots of emails asking how Kaley is doing. 
As I posted on Wednesday night, Kaley was rushed into surgery after they took an Xray which showed a perforation in her intestines following her morning colonoscopy. The perforation could have been done by the scope during the procedure or it could have happened earlier and it only tore more when they put air into intestines for the procedure. She had been having more and more pain each day over the past week which makes me believe that maybe something was going on before the colonoscopy and this just made it bad enough for red flags to go up. In all honesty, after seeing pictures of her large intestines, surgery was most likely going to be needed anyway because they were SEVERLY diseased all the way around from the colitis. We were planning to try an IV med that day (and had actually started it when they realized she needed the surgery ASAP) but they really didn’t think it was going to work and had already sent the surgical team in to talk to me about what the surgery would entail and that the next scheduled time available would be next Thursday. Luckily, they got the results of the Xray right when the surgical team was in the room talking to me. SO pretty much after they had gone over everything and were walking out, they were stopped by the Dr and came back in to say “plans have changed, we need to do this NOW”
Obviously I had not prepared for that and pretty much lost it the second the surgeon told me but my mom and Kevin rushed to be here as well as a friend of mine and Kaley’s other grandma and uncle so I had lots of support to help get me through the 2 hour wait. Because of how damaged her large intestines were, they had to remove them ALL and because her colon had perforated they had to cut her wide open to make sure nothing was leaking through her body and clean it out if it had.
The surgery went well and she spent yesterday pretty much sleeping. When she was awake, she was in a daze from the pain meds (she has a button to push that puts dilotin into her IV). Today she has been more alert and even got out of bed for a bit (they really rush you to do that after surgery to get everything moving again inside you). We were finally able to really talk about the surgery and what will happen from here on out. She had been in in sooo much pain for so long that she was just glad to not be hurting like she was. The effects from not having her large intestines is kinda better than living with severe colitis (in our opinions) so as long as the next 2 surgeries (over the next 4 months) go well she will have a better life and not have to deal with Colitis flareups and constant meds.
Again I want to thank everyone for their love and support and prayers over the past month. It has really helped both me and Kaley get through this horrific situation. Through it all, we have learned just how blessed we really are !!!! **we should be able to leave in about a week depending on how fast she heals and is able to start eating on her own again (she has been on 24 hour TPN through her PICU line for awhile so they will have to gradually switch her over to regular food)
If looks could kill you would be in big big trouble.
I am going to make a hard bound scrapbook of her entire journey through this horrible experience and I told her this was a BIG step for her… getting out of the bed after surgery is so painful and yet she pushed through it.. such a strong girl !!!
I am so happy things are going better now and that she should have a normal life now. It is also good that girls/women are much stronger than us wimpy guys because I highly doubt I would be as strong as Kaley has been. IF you need those bogo schick coupons or vans coupons let me know because I printed extra in case you needed some as I doubt couponing as been on your mind much(don’t blame you a bit).
awww you are so sweet. I cant wait to get back to life and shopping for the deals I am finding. Kevin did get me a few things like the free Yakisoba at Publix so that I would’t miss getting them hehe
Amy I am sooooooo happy to hear things are going better for Kaley we all have been praying for both of you . You are both very brave . I’m sure great things are in for you and your family . Again if there is anything you need any help anything , let me know .
we are happy that she is doing good.
Thanks so much for the update. Even though we don’t know each other, you all have been on my mind all day. So glad to hear how well she’s doing.
I am happy all the prayers worked!! We will continue to pray! <3
I’m so happy to hear that she’s getting better, way to go Kaley!, both really are very strong.
I cannot believe what your daughter has gone through! She is quite an inspiration! And to think of the pain she has been in, I cannot even imagine! Many prayers for a speedy recovery from here!!!
I’ve been checking your blog more often than usual just to see if there has been an update on Kaley. (as if you don’t have enough going on to update all of us) As a mother I can only imagine what you’ve been going through. I admire your strength and hope Kaley is on the fast track to recovery!
Glad that things are better. Praying that you will get to go home soon.
Im so glad that everything went well…we think about u guys everyday~~!!
Thank god she is doing better
Once she gets stronger I’m sure you will start to feel better. What a wild ride you all have been on, bet Kaley can’t wait to get home? Thank you for giving updates. I pray this will all be over soon. Take care.
Laura
I am so happy that she is feeling a little better, really makes you realize how much pain she must have been in, if major abdominal surgery has actually made her feel better.
How does she live with no large intestines?
You are amazing! and I know Kaley has to be so happy to have you for a mom.
I pray that you all get home, so Kyle, Kaley and you can all be together again.
Love and prayers
The function of the large intestine is to pull the liquid from your stool (basically to harden it) so she will always have very loose watery stool for life. But its something we will deal with and honestly much better than dealing with colitis.
Right now she has a ostomy bag outside her body and the second surgery will be to attach her small intestine and put a bag inside her, then her 3rd surgery will be to take the bag out and hopefully everything will work right and she will be able to go to the bathroom just like before (except with it being very watery)
I know that may have been TMI haha (I didn’t want to post it on the front update but since you asked hehe)
thanks for the updates on kaley. i am so glad things are looking up. i can’t imagine how tough this ordeal has been but kaley is lucky to have such a great support system and i wish you all continued strength.
Not too much info, I am really interested and concerned. Has Kaley suffered with the colitis for a long time? I thought I read that this was the first bout? How unsual is it for a first attack to be so severe?
Yes this was her first flareup… Its so crazy how damaged it was and she had never had symptoms before.. Such an odd disease!!!!
Bless her heart and yours as well! She has had such a hard time, and I’m sure it has been hard on you seeing her like she has been. Hopefully, she is on the road to recovery now. I will continue to keep both of you in my prayers. God bless!
I know what you are going through Amy. My husband went through this exact ordeal after he had lived 10 years in pain from Ulcerative Colitis. She is young and will heal quickly. If you need anything, let me know. Remember to take care of yourself!
Im glad you answered the question about her having a bag. Glad they will take care of that at a later time. Good luck to her and the whole family!!
Thank you so much for keeping us all updated. I hope that both you & Kaley have found some comfort in all of the kind comments, and in knowing that there are lots of prayers going up for her every day. Hopefully this chapter in your lives is finally coming to an end.
PS Kaley, girl, you are ROCKIN those braids!
I believe the surgeries will go well……I have watched 2 members of my church go from bag to normal! (at least to all outward appearances) Thank you for the updates. I know it must seem weird to Kaley to have people she doesn’t know ask about her, but tell her its like an extended family….:) Hang in there, you have been through a lot, but it sounds like it will get better from here. Continuing prayers on my end…..
Soooo glad to hear things are going better. Kaley, feel better soon so you can go home.
Glad to hear Kaley is finally feeling better! Thank you for all the updates. Sending best wishes for a speedy recovery and for life to get back to normal for you all.
Godbless and I hope that all will continue to go well. Hang in there Kaley the suns about to shine!!!!!!!
So glad to hear, Kaley you’re super strong.
So glad you little girl is doing better. Prayers really do work wonders. Thanks for explaining her surgery. Never worry about anything you need or want to talk about. That’s what friends are for. We all are here for you 24/7. The medical field is just amazing. So glad she is better. Both of you have been so strong. Keep leaning on God.
Kaley, you are so brave! Everything will work out!!! God Bless you guys!!
Amy,
What an ordeal ………. All of this would be difficult on anyone, but especially a teenage girl. I am so glad that you and Kaley have the support of family and friends around you. Please know that you all are in my thoughts and prayers…………..health, peace, contentment, love.
God speed to both of you. It takes a lot of heat to make a diamond…
I have been checking your website everyday since you posted the emergency surgery wondering what was going on. I am SO happy to hear everything is finally going good. I will continue to keep your family in my prayers!
She looks like she has lost a ton of weight! She was tiny before.
yea but she will have fun eating once she is able to
Good luck to you and your family! I certainly hope the best for Kaley and hope you all remain positive during this tough time.
Thank you for the updates.
Amy and Kaley, I am a mother of 4 young kids and I’m sure your mother must be so proud of your strength and strong will. I know it isn’t so comforting but I know we grow so much in all our sufferings and struggles in life and pray that you will start to feel better soon! Been praying for you and your family.
Kaley looks amazing after all she has gone through…great look of determination…thank you for keeping everyone up on the latest info…so sorry she has to have more operations, but glad she won’t have pain or meds Glad this ordeal will finally end and you can all go home and get back to your lives…take care and know that many people send prayers and positive vibes for a quick recovery.
Still praying for you both.
Go Kaley! Hang in there kiddo
Glad to hear she might be able to go home soon. Looks like something good came from something bad. That she got her surgery moved up and she will be able to start healing and go home. Keep us updated, we love to hear your family’s inspiration.
Wow – so glad to hear shes on the mend. Sounds like she has really been through it. She’s a tough and brave young lady. I’m sorry she’s been in so much pain but glad all that is now coming to an end.
Best wishes and have a speedy recovery, Kaley. you have many people that care and have been sending positive thoughts your way.
What a shock to read about the recent events! Was praying that it wouldn’t get to this point, but if it makes her feel better, then it is for the best. May God continue to give you the strength & courage to deal with all of this. Glad to see her looking remarkably well.
Thank you for the update. I’ve been following your story and praying for Kaley and you. Blessings!
I have been reading the updates on Kaley as they come through my emails. I am so relieved that the surgery went well. I was praying for her. I pray that she has a fast and speedy recovery.
I have been follow up ur blog for quite a while now, am sending u and ur family all my love, support and blessing thru this process. I wish u were in Miami where my sisiter is in the team of surgeries I will be telling her to treat ur family very good, however u and ur daughter are in God’s hands and he will help u go thru this, Things will get better have a lot of Faith. Iam going to church tomorrow and be assure that i will be praying for Kaley speedy recovery. God Bless.
was wondering what was going on as I hadn’t seen an update in a while. So glad the surgery is done with, I know you were concerned about having surgery but sometimes when you least expect it, you don’t have the choice and it just happens and for the best as it sounds. She will feel so much better now, without the pain and bleeding. Being a kid, she will heal quickly and before you know it, she will be like every other kid. A good friend of mine’s son just had open heart surgery and within 1 week he was home and restless to go do things, it is amazing how fast they heal!
Yes they do get you up moving (as well as your insides). They had me up the day after. I had a 6 inch surgical site and drain tube in my abdomen, not to mention the drain tube in my nose to my stomach. The nurses there told me just before surgery that the more pain meds I would use, the slower your intestines get back up to work. I think I pressed my pain pump 3 times. I wanted to get home back to my hubby and son. If she can have liquids, do warm/hot liquids. It helps get things awake and working faster. Glad she’s doing better. Tell her to keep her head up and she’s got a bunch of support (as do you too).
So glad Kaley is doing better.