Well, here is the latest theory and information. Kinzie possibly has a neurogenic bladder meaning that the neurons telling the muscles to contract are damaged. However, those neurons are located in the tail of the spinal cord and after a spinal ultrasound and spinal MRI we have found hers to be completely normal! Thank goodness. So where the damage would be from, we are not sure. Hopefully, urology can tell us where and/or if she even really has a neurogenic bladder on Monday. Her urine output was slowly increasing the last two days but is again low. We are currently wondering if her episodes are related to a distended bladder but after cathing her today immediately after an episode we found it to be moderately full. Urology wants to do testing after discharge. I'm trying to get them to do it before we leave to save us a trip back down. Makes sense to me!
Kinzie is hanging in there. She has been a little fussy these last couple days but is really a pretty quiet baby. She is waking up more and more, at least her eyes are more open. She has always been alert but with her eyes closed or peeking. We will test her eyes at 6 months to see how well she sees and focuses.
I have pictures to post but will have to do it later. Gotta run to feed her.
Thanks to everyone for your thoughts and prayers.
5 comments:
I'm with you, if there is any testing they are thinking of doing, do it now.
Hope she gets to go home this week, it's been a long stay for all of you.
Kara, my heart is just aching for you and your family. You will definitely be in my prayers. What a sweetheart little Kinzie is to endure all of this. What a special, special child. Give her a kiss for me. I love you - hang in there.
Thanks for the updates! Just wanted to let you know I'm thinking about you!
Danae
im so happy you get to go home tomorrow! i hope they can give you answers on the bladder thing quick and get her feeling even better. love you and praying for you :)
I know you posted about this a while ago, but I was wondering how the UTIs are doing. Are you still cathing her regularly? Annie has also been diagnosed with a neurogenic bladder and used to get a UTI about once a month. One urologist suggested we start cathing her, but we weren't too excited about that, especially since cathing alone can introduce bacteria, and it's more difficult with Annie in school and much larger now. However, another urologist suggested prophylactic antibiotics--continuously taking a low dose antibiotic--and that has resolved all her issues. It's much more convenient and safer than cathing, but Annie is much older than Kinzie of course. It was just a thought I had as I read this post. I know you're doing a great job doing your best to take care of Kinzie. We'll keep her in our prayers!
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