Spawn of Bon Posted September 23, 2023 Share Posted September 23, 2023 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) Bon and WMJ77 1 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted September 23, 2023 Share Posted September 23, 2023 Bon 1 Link to comment Share on other sites More sharing options...
Petee Posted September 24, 2023 Share Posted September 24, 2023 12 hours ago, Spawn of Bon said: 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) If that doesn't make you cry, then what would? Spawn of Bon and WMJ77 1 1 Link to comment Share on other sites More sharing options...
WMJ77 Posted October 29, 2023 Share Posted October 29, 2023 FAITH..."SCARECROW"...Have a great time trick or treating !!! Link to comment Share on other sites More sharing options...
Bon Posted October 30, 2023 Author Share Posted October 30, 2023 etsaunt 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted November 14, 2023 Share Posted November 14, 2023 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 Bon 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted November 14, 2023 Share Posted November 14, 2023 https://fb.watch/ojtK2vMW-m/ WMJ77 1 Link to comment Share on other sites More sharing options...
WMJ77 Posted November 15, 2023 Share Posted November 15, 2023 great now I have 3 ways for updates Spawn of Bon and Bon 1 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted November 16, 2023 Share Posted November 16, 2023 https://fb.watch/ol7Agg884r/ I hope you all can see this! Link to comment Share on other sites More sharing options...
WMJ77 Posted November 23, 2023 Share Posted November 23, 2023 +Happy turkey day Faith and family Bon 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted November 24, 2023 Share Posted November 24, 2023 Happy Thanksgiving! Happy Thanksgiving from our Faith!❤️ She may look a little tired but she is So thankful for all the visitors and love she received today ❤️ Bon and Polo 2 Link to comment Share on other sites More sharing options...
Bon Posted November 24, 2023 Author Share Posted November 24, 2023 She sure did have a busy day yesterday with 9 visitors!! Brandi & Deryk cooked the turkey plus 99.9% of the meal. I taught them how to make deviled eggs. 😊 Plus I dropped off 2 pies Turkey Eve, Lemon meringue & heath cheesecake, plus a bag of frozen cauliflower & dinner rolls. Polo 1 Link to comment Share on other sites More sharing options...
Polo Posted November 30, 2023 Share Posted November 30, 2023 She is just precious! I saw on FB how she is working on moving her legs and responding to her physical therapist. She is doing a great job! So proud of her! Bon 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted December 2, 2023 Share Posted December 2, 2023 Here’s a few pics we started with for Christmas this year! Bon 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted December 2, 2023 Share Posted December 2, 2023 And here’s how she REALLY felt about our photo session 😂 Bon and WMJ77 2 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted December 5, 2023 Share Posted December 5, 2023 Faiths Make A wish interview at Sunny 106! 📸 Watch this video on Facebook https://www.facebook.com/share/v/ZgGmsmBR7Hoz5jYL/?mibextid=KsPBc6 Bon 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted December 21, 2023 Share Posted December 21, 2023 Christmas outfit for today! “Let’s get Crackin!” Link to comment Share on other sites More sharing options...
Petee Posted December 21, 2023 Share Posted December 21, 2023 3 hours ago, Spawn of Bon said: Christmas outfit for today! “Let’s get Crackin!” Saw her patiently trolling around Walmart with her Mommy and Daddy shopping. She was so calm till her Mommy picked her up and started loving on her. She went wild loving back. Merry Christmas. Hubby and I got a gift that night! Thank you for sharing her with all of us. Spawn of Bon 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted December 22, 2023 Share Posted December 22, 2023 Can you spot the REAL Cindy Lou Who? 🥰🎄🤣 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted December 22, 2023 Share Posted December 22, 2023 Link to comment Share on other sites More sharing options...
Petee Posted December 22, 2023 Share Posted December 22, 2023 1 hour ago, Spawn of Bon said: Can you spot the REAL Cindy Lou Who? 🥰🎄🤣 She's sweet enough to be the very best Faith Who! Spawn of Bon 1 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted December 25, 2023 Share Posted December 25, 2023 Merry Christmas Everyone! Link to comment Share on other sites More sharing options...
Spawn of Bon Posted January 14 Share Posted January 14 I’m gonna check with Steve and see if I can get a video loaded 🥰 Link to comment Share on other sites More sharing options...
Spawn of Bon Posted January 14 Share Posted January 14 Tomorrow, Jan 15th Faith will be 5 YEARS OLD! https://fb.watch/pzRJlsJwR0/? Link to comment Share on other sites More sharing options...
Petee Posted January 15 Share Posted January 15 9 hours ago, Spawn of Bon said: Tomorrow, Jan 15th Faith will be 5 YEARS OLD! https://fb.watch/pzRJlsJwR0/? She is just way too cute!! Link to comment Share on other sites More sharing options...
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