Cole

Grandparents Name: Hilda
Child's Name: Cole
Child's Birthdate: 11/10/98
Email: talksum2@comcast.net
Location: Southampton, NJ
Diagnosis: PUVs, urethral stricture


Story:

Cole was born 8lbs., 9ozs. on Nov 10th, 1998. When he was born he had to be delivered by C-section after 14 hours of labor because he had heart rate decelerations. He had feeding difficulties and had to stay in the intensive care nursery during his first few days of life. However, the hospital sent him home thinking that he was completely healthy.

During his first week check-up the Doctor discovered that Cole's voiding stream was very weak and after a second look at his stream several days later it was determined that he should see a Urologist immediately and so he was rushed to our nearest hospital that could handle his case, St Christopher's in Philadelphia. Shortly after arriving at the hospital the docs determined that Cole's urethra was blocked and they took Cole into surgery. There he had excess urine removed form his bladder and kidneys and the Doctors finished the surgery by leaving a vesicostomy for the urine to empty from his bladder. It was determined at this time that Cole had damage to his kidneys and from there he was also referred to a Nephrologist. Our Nephrologist has told us that Cole will need a kidney transplant sometime in the future but we do not know when that will be. And although no one knows whether or not we will have a Living Related Donor, we do at least know for now that both parents are blood matches which is keeping us in high hopes that when transplant arrives one of us will be lucky enough to also be a "perfect match".

When Cole was 9 months old his vesicostomy was closed and we thought that the Docs would remove the "PUV's" but it became apparent that Cole did not only have "PUV's", but he also had a "Urethral Stricture" which is longer and thicker than PUV's and harder to tunnel through to find a passage for the urine to flow through. Cole's Urethra continued to close a bit every so often and he had to go back for repeated fulgurations (removal of tissue that grows back after surgery) probably around 12 different times.

In 2003 we tried to "self-cath" Cole following two different surgeries. The idea behind the catheterization was to pass the catheter once a day in hopes to keep the stricture from growing back. Cole will not tolerate the catheter and we have abandoned the idea on both occasions. We tried many ways to get him to take the catheter...prizes,rewards,coaxing,teamwork, etc...and now matter what we tried it would not work. Cole's stricture is located higher inside the urethra. It is close to the sphincter area near the bladder. Therefore, it is not likely a surgery to remove the strictured area and re-attach the urethra will be a success. He has not been back since he was 5 for stricture removal but takes a long time to void.

Cole also has Grade V reflux and it has been mentioned that a re-implantation of the urethras would be a good idea. However, a second opinion from another doctor suggested otherwise so we did not reimpant them.

Cole's bladder may need augmentation at some point and a Mitrofanoff has been mentioned and it is something that we may have to consider in the future. Cole has about 45 percent kidney function and takes Sodium Bicarbonate to help with Renal Tubular Acidosis. He has been diagnosed with Chronic Renal Failure and Dysplasia in both Kidneys. He also has Hydronephrosis. In addition to the other meds, Cole takes Bactrim on a nightly basis since he was first operated on and continues to take it and he is now 11 years old. He also took DHT to help with is bone growth.

Cole used to gag upon seeing his formula bottle and did not eat anything but formula till he was two as he had an aversion to food, which today, 11 years later we call him the bottomless pit as he eats everything. Cole met all his milestones but continued to be off the growth charts for both weight and height. Today he is in the 30% for height and 50% for weight.

Cole is extremely bright and outgoing, possible ADHD but not been diagnosed. Maintains almost straight A's in 5th grade and takes guitar lessons. In retrospect Cole has done much better than we thought he would and he surprises us with his strength and great attitude every single day. Cole's creatine was 1.2 at age 5 and today at age 11 it is 1.3. Unfortunately he's in 5th grade this year and continues to wear pull-ups. He leaks. The uro has suggested a mitrofinoff which we are reluctant to do at this time. Cole is being treated at CHOP in Philadelphia.