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Uro News for those who follow Peyton

realisticdreamsrealisticdreams member
in Special Needs

I'm going to try and make this short and sweet (which probably won't happen), so I apologize in advance.

We met with the head of VCU pediatric uro and the NP who we saw at the spina bifida clinic (I LOVE HER!)  We spent a total of over 45 minutes with both of them. They showed me some of the images from the urodynamic study and basically Peytons' bladder is HUGE for lack of a better word.  They said that it gets so big it covers both of her kidneys.  It's losing it's muscle tone.  Their are multiple reasons pointing to us needing to cath and I trust their opinion.  I think over the past week I knew that's what they were going to say and had somewhat accepted it.

The hope is that we can cath for a period of time and then do a procedure to enlarge her sphincter as it doesn't open well to let urine out.  IF she doesn't let us cath and she gets any worse we have to seriously consider a vesicostomy.  I was happy to find out this was reversible.  I'm confident in their ability to treat Peyton as an individual not as how a textbook says you should treat XYZ.  

He said not to feel like we are going to have to cath forever, but to give her bladder a rest from the high pressures and hopefully it can regain some tone and with the help of the sphincter enlargement her issues could possibly resolve on their own.  I'm not sure the likelihood of this happening, honestly.  It's probably better that I don't know.  I don't want to cling to anything right now.

So, we have started letting her play with some catheters, she said "these help me go pee" so she knows what they are for, already.  She even wanted to take one to the potty.  And she wanted to help Morgan pee as well!

IF i can get her to relax I think this will be easy especially since I can let her 'help' do certain things.  If she refuses then it's going to be a major surgery so hopefully with time, and the right assistance, we can handle this.

Also have to get Morgan set up for a sibling screening kidney ultrasound and VCUG since reflux has a higher incidence of being found in siblings. HOWEVER it's unlikely since Peyton's reflux is from her high pressures not an anatomy issue.  

All in all, i'm feeling pretty OK with everything...today that is, lol.

Thanks again for all of your support and well wishes to Peyton. 

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: Uro News for those who follow Peyton

  • Florak8Florak8
    Awww, this sounds like a really good plan. I can tell you are feeling better about it, and it sounds like these docs do treat Peyton as an individual and have lots of hope for her to do better. Really glad to hear this! :)
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  • JcrabJcrab
    Glad to see your update, it seems like you have found the right team to start getting answers and moving forward. Kids are very adaptable, I think the uro team can definitely help make the transition to cathing her doable. Keep us updated!
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  • MummyGruetzieMummyGruetzie member

    I know the cathing isn't what you wanted, but it sounds like your team is really looking out for Peyton and trying to make sure they do what's in her best interest.

    ... On a side note, I loved reading that she's playing with the caths. :) My girls have several dolls with g-tubes, they've all been de-cannulated now so they no longer have their trachs. One seems to have a permanent IV. And one has a cochlear implant. This kind of play has paved the way to so many good things both in our family and group of friends .... and I really hope that it helps Peyton to be able to handle the cathing!!!  

    Keep us posted.  

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