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Our Story

Yes...he IS as ornery as that grin suggests! 

Sweet Henry Jordan Whitacre. Toddler, son, grandson, friend, Jesus-lover, kidney kid!  Henry was born in July of 201, after already undergoing TWO operative procedures in-utero in an effort to save his kidneys following a diagnosis of Bladder Outlet Obstruction. Now, three-and-a-half years later, Henry is waiting for a kidney transplant after being on dialysis from the time he was born. The smile you see is not a fake by any means. Through all his trials and tribulations, too many surgeries to count, and many MANY hospital stays, Henry can ALWAYS be seen with a smile on his face. 

As you might imagine, life with a toddler who has kidney disease can be...unpredictable! Just in the last few months, Henry has undergone anasthesia 5 times to correct the placement of his dialysis catheter in order to ensure it works correctly. As parents we are constantly watching for signs of "The Fountain" since Henry's digestive system doesn't work quite the way that it should. This means an endless supply of laundry, and continuously reminding Henry to "slow down" (not an easy feat for a toddler). But!  Through it all, even on his worst days, Henry will always smile, and though it seems so tiring for him and us all, he loves his "Riley's House" family, and so do we!  After three long years of weekly (and right now - daily) visits, the amazing doctors and nurses and care staff at Riley ARE a second family to us.  

Unpredicatbility is something we've come to accept and plan for with Mr. Henry, though one thing is for certain: he needs a kidney. Several internal systems have been effected by Henry's kidney disease and initial diagnosis of Bladder Outlet Obstruction. Below, you will find some key players in Henry's "village" and his early story in a timeline format. For now, Henry has dialysis four days a week at Riley Hospital for Children, 125 miles (one way) from where we live. Henry's dad, Kevin, faithfully makes this drive every morning so that Henry can have the dialysis he needs, while mom, Emily, works. This ends up being a full time job for Henry and dad, as they leave the house each day by 7, and don't return until 4, sometimes later! 

Over the years, so many people have asked questions, and asked how they can help. Now is the time when we are looking to expand our "village!" First and foremost, your prayers are appreciated more than you could ever know. On more than one occasion, the power of prayer has been the only thing that has saved our sweet Henry J. Now, you can also join our village by following the blog attached to this page, or by contributing to COTA in honor of Henry! As you might imagine, having a sick child means costs not only now, but for years to come. With each new year comes a new insurance deductible, new out-of-pocket expenses, and new medications. On top of that, Henry is only guaranteed insurance coverage for now, a scary thought as we look ahead toward a lifetime of procedures and medications. Thank goodness for COTA, and it's drive to assist families like ours for a lifetime! We look forward to communicating with and meeting as many of you as possible in the coming months and years!  If you have any questions please feel free to comment here and someone will respond as soon as possible!     

   Peace, love, and healthy kidneys! ~ Emily Jones (Henry's mom) 

Timeline of Events: 

March 2014 - Henry's parents have a routine ultrasound, a "mass" is found. Parents and family head to Cincinnatti Children's Hospital for testing and diagnosis. After two days of intense testing, it is determined that Henry has Bladder Outlet Obstruction(BOO), interventions are explained. Three days later, Emily undergoes a laparotomy so doctors can clear Henry's BOO. Procedure is successful, family returns home, Emily has weekly ultrasounds with specialist in Ft. Wayne. 

May 2014 - The hardware placed during Emily's procedure fails, bladder begins to retain fluid again. Family heads back to Cincinnatti, where Emily undergoes a less invasive procedure to place hardware. Procedure is successful, family returns home and Emily continues weekly ultrasounds with specialist in Ft. Wayne. 

June 2014 - Prior to a routine appt, Emily begins spotting/bleeding. Physical examination shows birth process has begun (10 weeks early). Family is transferred to Cincinnatti for UC Fetal Medicine Team to take over. Emily spends the month in and out of hospital admission, having contractions, spotting, and trying to sustain pregnancy in Ft Wayne/Cincinnatti. 

July 2014 - Early birth seems evident at this point, Emily is not allowed to return home for fear of delivering too far away. She spends the month having weekly, then daily ultrasounds at University of Cincinnatti/Cincinnatti Children's Hospital and resigns from her employer for the forseeable future. Family members take turns staying with Emily at a local hotel, and Kevin comes down on the weekends. 

July 18 2014 - Henry is born! Henry is immediately transferred to Cincinnatti Children's Hospital NICU. The first weeks are critical, incluidng a bedside procedure the day he is born to replace colon/tissue/bowel that was formed outside of body during pregnancy. At three days old, surgery to create a ureterostomy is done. At two weeks old, a G-tube is placed to assist with feeding intolerance. At one month old, a peritoneal diaylisis catheter is placed, and two weeks later dialysis begins. 

Jan 2015 - After several long months in the NICU at Cincinnatti and Riley Hospital for Children, Henry comes home for the first time!  Mom, dad, and family are thrilled! Henry visits the clinic three days a week at Riley, wears continuous oxygen to address pulmonary issues, and will begin Physical Therapy weekly. 

July 2015 - Henry is a year old!  He gets to come off continuous oxygen, and only has to wear it at night! During his birthday party, his catheter gets caught and snaps in half. Mom, dad, and Henry ship off to Riley for a couple of days, but it is determined the catheter can be fixed vs. replaced surgically. PTL! 

Fall/Christmas 2015 - Henry develops Fungal Peritonitis and begins several rounds of antibiotics that prove unsuccessful. Henry's catheter is removed, and a Hemodialysis catheter is placed. Henry and mom visit Riley 3x a week for dialysis while Henry heals. A new PD catheter is placed, but infection returns. After another round of antibiotics, hardware from previous surgery is removed, and tests positive for infection. Following removal of hardware, Henry heals and is able to return to Peritoneal Dialysis. 

Spring 2016 - Henry's digestive problems worsen, and it is determined that he has a twisted bowel. Emergency surgery is done - LADD's Procedure, and while in the OR they remove his appendix. 

Summer 2016 - Henry's 2nd Birthday!  Another sleep study determines that Henry still needs to wear oxygen at night while sleeping. 

Fall 2016 - Surgery is planned for Henry's bladder, to reconstruct and prep it for an eventual kidney transplant. Henry gets possible peritonitis again, antibiotics begin, surgery postponed. 

Thanksgiving 2016 - Henry undergoes bladder reconstructive surgery, a 10 hour procedure. The surgery goes well!  While recovering, Henry starts to have blood in stool. Henry is discharged from hospital, returns the next day following a bright red bloody stool. 

December 2016 - After failing to cauterize what has been determined to be an internal bleed, Henry undergoes emergency surgery to find and stop the internal bleeding. A bleeding ulcer is found and stitched closed, but this is Henrys third major surgery in three weeks. Recovery is hard, Henry is critical.  After a week or so, and several blood transfusions, Henry perks up and the family is able to be home for Christmas! Another short hospital stay between Christmas and New Years allows the family to be home just in time for NYE with a ~relatively~ healthy Henry!  Praise God! 

Spring 2017 - The flu is here!  Henry is unable to fight off a respiratory virus on his own, and spends three weeks in the hospital on 16L of hi-flow oxygen in the PICU at Riley. Scary time! Fully recovered, he returns home in April. 

Following the flu, it is determined that Henry needs to have dialysis treatment 6 days a week. After a month or so, it is dropped to 5 days a week, and by Jan 2018, Henry attends dialysis 4 days a week! 

Comments

  • Tric

    Oh my goodness Em, I am just in tears reading all of this, I can't imagine what you and your family have gone thru. I hope you find a donor soon, I would definitely donate if I was a match! Thinking of you and your sweet boy.

  • John

    Praying for Henry from Baltimore MD.

  • AnnMarie

    I saw on the news that there will be a "silent auction" in Fort Wayne. What type of items are you auctioning? It's possible I may be able to donate. Contact #269-635-0473 Blessings and prayers!

  • Becky

    I have been following your little Henry for months now. You don't know me, but I grew up with Dawn and Tina when they lived on Cass St. I was even a shirt-tail relative when my Dad married a family member ????. I do understand this heartbreak because my granddaughter became ill with kidney failure when she was 6 months old. She also has undergone many of these trials and was lucky to have her father donate a kidney when she was 4 years old. Now that kidney has failed and our daughter will now donate. God Bless you for being strong and diligent in your care for your beautiful son. My prayers are with all of you as I follow your progress.

  • Teresa

    I was born in 1965 with this type of urinary disorder. I was premature but no one seemed concerned. Since there was little diagnostic tests available, my issues if failing to gain weight, vomiting a lot and failure to potty train were blamed on my Mother not knowing how to parent. I remember being "potty trained", which i had no idea what that was, i only felt pee dribble out when my urinary tract was full. I was thin and spindly with a huge buldging abdomen. Finally, at 6 i was operated on as an exploratory, this was 1971, and they removed most of my bladder and left me incontinent until i was 9 and received a urostomy after my kidneys failed. My childhood is full of medically invasive procedures. I have had over 30 surgeries How i am still alive i dont know. I have never felt the urge to urinate, i had a urostomy until age 17 (and recieved no psych. Help for coping w the social issues if feeling like a creepy, freak..with an awful thing to hide) from 17 to 27 i used a catheter..again had no counseling and thought the bladder was just a baloon i could empty whenever i felt like it and did not understand what Pylonephritis even meant. At 27 my kidneys were about shot and i lucked into an experimental surgery of bladder augmentation using my stomach tissues. During the movie Pretty Woman i felt a type of urge to pee and peed for the first time in my life. That surgery allowed me 8 more years until i needed a transplant and recieved one from my brother. However, the surgery eventually led to the distruction of my bladder tissue by the uric acid from the stomach patch. When I started dialysis in 2013, i was in horrendous physical pain from the acid and eventually decided that i did not want to live in that condition (which a transplant would not fix, i nearly bled to death from a bladder hemorrage twice) and this year i requested and finally had my entire urinary tract removed, including the transplant kidney my brother had given me..which broke my heart as he passed away in 2013 @ 43 years old. I removed myself from the transplant list prior as i felt those organs should go to kids and younger folks who can benefit most from it. I know this is long, but i have spent my life trying to understand why this happened to me. I am so glad this can be seen on ultrasound and that it can be helped in a way, but devasted that it still occurs. In my day there was no celebration of my strength, just something no one understood that meant i was limited and had to keep a "secret". . I hope Henry grows to see that he is a miracle and that his physical being in not who he is. As someone who has lived 53 years with a urinary tract disorder..Thank You for being open and sharing your wonderful boys life with the world..i wish him a wonderful life and the gift of being who he is without feeling like he is broken (something i struggle with). I hope he knows he is not the only one. And i really hope we can figure out why this happens and prevent it so kids do not have to experience this. Bless you and Henry! T

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