Well after our 4 day stay at KCH we left Wednesday night feeling like Ky was much better…. until I got ready to do her night routine and could not FIND her urethra to cath her! Her urologist believes that she has had a mucousal tear. I knew that she had bled after we took out the cath and that she had NEVER done that before but thought… well there is a first time for everything. After not being able to cath her for three cathings I called Cincinnati to talk to Dr. Alam. He said that she needed to be admitted because she definitely needed a foley back in until the trauma in the area healed but that she may need an OR trip to get it in.
After 4 docs and several hours of trying to get a foley in her we were just about to set up and OR and finally someone managed to get one in. We emptied off 200+ CC… Which for anyone who knows nothing about the bladder capacity of a 2 year old… that is a LOT!
The biggest concern right now is that she may have reopened her fistula from birth. If this is true it also explains the UTIs but we are hoping not. They discharged her on Friday afternoon and before I could walk back in the door Lindsay, Dr. Levitt’s nurse, was calling to say that she had Ky’s OR time set for MONDAY (as in two days from now!) at 6:30 am. Obviously someone is worried.
So… Monday we will be headed back to Cincy for OR time with Dr. Levitt and Alam. I was hoping that Dr. Breech (gyno) would be able to be involved also but I know that if Dr. Levitt feels that it is warranted he will call her. Say a prayer… it just never ends around here!
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Amber,
I am so sorry your little one is having so much difficulity..
Will have you all in my prayers!
Blessings of comfort and peace to you all,
Laurie
UGH!!!!!! Seriously????? You guys are in our prayers. Please tell me Ky will be an angel this Halloween, cause she certainly deserves to be!
oh my…prayers…xoxo
You guys are in our prayers! If you were having it at UK, I would bring Ky some “apples”!
Well….well….well that would definately explain the UTI’s. Keep us all posted on how Monday goes. Our prayers will be with you and Ky. Lori
Gracious day!!! You guys are always in my prayers. I don’t know the reason Ky has to go through all this, let alone you, but she is building up one HUGE testimony for when she is older. Prayers of healing for Ky, Peace and Comfort for you and Wisdom and Knowledge for the Drs. on Monday.
HUGS…..
Chartiy
Amber, I have been worried that you didn’t post after being discharged. and now this- are you kidding? This is unreal- what an awful turn of events.
Whatever telepathic crisis wavelength our daughters have between them needs to end. You need a break SO badly.
I’ll be thinking and praying for you on monday – for nothing serious to be found, bu if somehting is really wrong the two wonderful surgeons will fix it!
(Eithene’s headed back to the OR on tuesday… and we have some scary decisions to be made before then, so we’d love your prayers too!)
By the way, what was the official diagnosis for Ky from the GI stuff? Just ‘intolerance”???
We are always thinking of you and your kids- especially Ky- Eithene’s VACTERL twin, lol.
Jessica
http://www.caringbridge.org/visit/eithenerosehilliard
Thinking of you and ky.
amber … oh girl. i wish i could hold you all right now. your in my thoughts and prayers!
amber … oh girl. i wish i could hold you all right now. your in my thoughts and prayers!
The official diagnosis for Ky for the colon stuff I believe was enterocolitis…
I came by from Tiff’s blog and I wanted to say you and Ky will be in my prayers.
Ky is is truly beautiful and her life and triumph over all these challenges will touch and bless many people. No wonder she makes your heart soar with pride.
May God grant you peace during this time and give your strength and continue to carry you through this difficult journey.
I have two little boys born July 1st 2006 – one has kidney reflux and a small kidney but nothing compared to Ky and the other has a genetic condition – challenges that we cannot predict.I can only imagine how you cope day to day.