Right after 3 am MRI (I was exhausted)
The last I updated was a week ago but we are still in the hospital. Her pain isn’t as bad but her pancreas and gall bladder are still inflamed so they were doing lots of tests this week to figure out why this could be going on. They did an ultrasound, a CT scan, a HIDA test (for her gall bladder) and a MRCP (a type of MRI). All tests came back normal though so they started looking for other reasons and they think that possibly the small 4 inch section of her colon that is left (and still has colitis) is causing all the inflammation. They are going to do another Endoscopy and partial colonoscopy tomorrow afternoon to see what is going on.
Some good news is that they started her on a nasty tasting med that coats her entire stomach before she eats and she is no longer having any pain from eating (which makes them believe she has ulcers in her stomach or the top part of her small intestines). Her appetite is slowly increasing and her weight has gone up some in the past week.
They also are going to stop the lipids (which is the liquid fat she gets each day) because they found one reported case online where it caused a patient to get pancreatitis so they want to see if this could be causing issues for Kaley as well even though it would be super rare.
Her spirits are up and she has a lot more color to her so now its just a matter of getting her organs to stop being so inflamed so we can leave !!!
Gift Bag filled with goodies from Auburndale Life Church
Adorable pix…Kaley always has a beautiful smile…..unbelievable what she has been through…You are amazing…still looking for the good news and hanging in there…you are both incredible and it has been inspiring to read your updates and see Kaley keep on swimming…You are definitely in my thoughts and prayers and I send positive vibes constantly…Can’t wait to hear you are home and she is doing fantastic…thanks again for all of the pix and updates.
Thanks Carol…I sent you an email thanking you for the kids Halloween cards… that was the nicest thing to do. You have been so wonderful to us through this whole ordeal !!!
We <3 you
You are very welcome…wish I could do more you have definitely been amazing…hope you get some rest and can spend time with Kyle soon..take care
Nice picture, strong mom and daughter. You guys are looking good, I hope you all will be home soon.
Look – N – Good Mom –
Hope you got some rest today –
Everyone I know now knows Kaley – We are all Praying you are homeword bound soon –
zzzzzzzzzzzzzzzzzzzzzz
She is in my daily prayers. Every morning I check first to see if you have updated anything Please keep us posted.
I am amazed that you guys can still smile through all of this…God bless you!
Aww! Hope the doctors find answers soon. Will pray for wisdom for them and continue praying for complete healing for Kaley!
I had a friend whos son was having all kinds of these problems. they went to one last Dr before taking out the colon. He tested positive for E-Coli . Its something that you can get if you dont wash your hands after a bowel movement or when water wells get really low. One time a whole lake tested positive, several years ago. (My friend lived there) I really dont know if this relates to your special daughter but I thought I would bring it up.
They did a biopsy on her colon very early on and she definitely had colitis. Her colon is actually gone now excpet for the 4 inch section they kept so that they can reattach her small intestines during her 2nd surgery in a month or 2 from now (hoping to do it around the first of the year).
So glad to see you both smiling. I know you keep hearing it, but you are an amazing mom! and you can ‘see’ your wonderful traits in Kaley….just through these pictures and updates.
You will continue to be in my prayers.
God bless your family! We will continue to pray for an answer!
Still praying for your family. You are amazing.
I love Kaley’s facial expression….its a classic “mom, are we done with the pictures yet? Can I go home?” Mom and daughter pictures are always so sweet. Hopefully she will be able to spend Halloween at home or at least dress up and walk around the hospital receiving candy!