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Spawn of Bon

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    Meet my granddaughter Faith Marie

    in Message Place

    Posted

    I’m adding visual aides to this and hoped that helps

    We all have 2 kidneys, one left, one right, each has a Ureter (drainage tube) that leads from the kidney down to the bladder

    Faith of course has to be different 🤦‍♀️😂

    Faith has what’s called a “duplex” kidney on the right side

    So her right kidney did not form correctly and she has “two” kidneys and 2 ureters
    Think of conjoined twins

    This next pic looks close to what Faith’s kidney looks like on the right side
    Her left kidney is perfectly normal by the way

    As you can see there is an upper and lower kidney and each kidney section has its own ureter

    The lower kidney is the “duplex” 

    The upper kidney is perfectly normal and functioning well

    The lower kidney is the one that had the 2cm stone in it
    The issue she has now is that there is urine trapped inside that lower kidney and causing the kidney to be inflamed or “dilated”

    What the MRI of her kidney showed is that the lower ureter is restricted or narrowed so much so that it’s not allowing urine to pass from the lower kidney to the bladder 
    It’s “obstructed”

    That narrowing and the trapped urine is what is causing stone formation and is also a big reason why she gets UTIs

    Think of stagnant water
    No water flow, allows for stagnant water and sediment to build up 
    If that helps

    So
    Faith needs another surgery

    They want to do a Pyeloplasty
    Which basically means

    They want to cut out the “obstructed” segment of the lower ureter and reconnect it with a stent

    The stent will then be removed about a month or so later

    Dr. Tasian feels extremely confident that this can be done At Pittsburgh and Dr Cannon her new urologist (since June) is willing to do it

    We are also waiting until after the holidays to do this

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    Meet my granddaughter Faith Marie

    in Message Place

    Posted

    Where do I begin
    Well all I can say is this … The kidney saga continues 🤦‍♀️
    We’ve been quiet because we didn’t want to post without knowing the answers
    We still don’t 
    The kidney that Faith had the 2cm kidney stone removed from (the right kidney) is not better 
    It is now dilated which means it’s swelled and has urine backed up in it…. Hydronephrosis…
    We’ve had some tests done to see if it was another stone
    It’s not
    It may possibly be a complication from the surgery like a build up of scar tissue where the ureter meets the kidney….
    To complicate things even more her bladder is also a complex case…here’s a mouthful for you….
    A neurogenic trabeculated bladder with diverticuli 
    Which means the bladder is not emptying completely, the walls are thickened and she has out pouchings all over her bladder from the excessive internal pressure 
    We don’t know why
    Possibly a mix of her Edward’s Syndrome (trisomy 18) and also her history of chronic utis and the septic infections
    So we have been working with both Children’s in Pittsburgh Urology as well as continuing with Children’s in Philadelphia Nephrology to see what’s what and why and more tests
    Faith is okay overall, we’ve had to add some extra things in her routine to manage her symptoms such as intermittent cathing, prevention of further UTIs and a very close eye on any UTIs that may be brewing
    We have a couple of tests here in the next month at both hospitals and hopefully the combined findings from these tests can get us answers
    We’ve had to be diligent and we have to continue to do so because these two issues can cause kidney damage and that’s a huge issue that we would very much want to avoid. 
    We are praying for answers, we are praying for action, we are praying for healing
    And also Faith is learning a teeny tiny bit of sign language…her favorite sign is “Love” she wanted to tell you all she loves you ❤️ (first pic)

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    Meet my granddaughter Faith Marie

    in Message Place

    Posted

    Oooo how I wish I could post videos on here 😭 

    anyway….Faith was also referred to Make A Wish by her oncologist and social worker and she was approved, so Peanut wished for a swing set so she could play outside and spend time with her family and friends outside too ❤️ that’s her Papa Rick (Deryk’s dad) in the pics with peanut and me

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    Meet my granddaughter Faith Marie

    in Message Place

    Posted

    Faith has hydronephrosis….urine backed up into her kidney

    we did see Children’s Pittsburgh urology this past Wednesday and I thought I’d have answers….it I dont

    basically they said that it’s a complication from the surgery she had in Philly so therefore it’s there problem so I wait till Monday to talk with CHOP (Philly) 🤦‍♀️ 

     

    Meet my granddaughter Faith Marie

    in Message Place

    Posted

    Our last admission in February we were told her kidney stone has gone from 8mm to 11 mm

    Then we saw urology after we got discharged back in February…..
    They said her urinary tract infections are from her bladder not working right not from the stones but rather a neurogenic bladder from a possible tethered spinal cord
    They also said that the 11mm stone is not a stone nor is it in her kidney
    And I needed to see pediatric surgery to discuss this unknown growth 
    Leading me to believe that this stone was not a stone and it was instead her cancer reoccurring 
    Then we got admitted again over Easter weekend for pain, fever and tachycardia , we were told that this growth is now 17 mm
    Dr. Meade (her cancer doctor) stepped in and said Whoa! This is not cancer, nor is is a growth, it IS in fact a stone on the INSIDE of her kidney

    So there was a lot of back n forth over this last 5 days we were in the hospital 

    urology is now telling us that it is not A stone but rather MULTIPLE stones lined up or clustered together in one spot making it SEEM like one stone…but it’s difficult to tell on the ultra sounds
    However they refuse to do any tests to find out for sure because this infection she has now is not related to her kidney stones and probably was so bad and more related to her Covid infection and they can’t do anything right now anyway because she is too sick

    They also have no plans to remove the stones in the future because they are not obstructing anything 
    (even though the ultra sound tech said it’s pretty close and she doesn’t know how any fluid is getting around this “stone” as it is…😑) 
    But anyway the stones aren’t causing any issues so there’s no reason to deal with them and they want to continue to monitor the stones as we have been and follow up with the MRI Faith has scheduled in May to check to see if she has a Tethered spinal cord
     (her spinal cord may be attached to her spine rather than just freely present in the spinal column and it may be being compressed which is causing an interruption in communication between her brain and bladder which is why her bladder isn’t emptying which may be why she’s having frequent UTIs) 
    However Dr. Meade feels if Faith had this tethered cord issue it would have already been discovered on her previous numerous MRIs she’s had in the pas two years……
    So we are home because Faith is fine now and urology will just “continue to monitor” 🙄😑😒

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