Bentley's Kidney Transplant

Bentley was born on February 6, 2014 with posterior urethra valves causing a type of reflux in the bladder and kidneys.  This reflux cause one of Bentley's kidney's not to form correctly and the other to work overtime during development.  He is dependent on peritoneal dialysis to do the work his kidneys are unable to do and a G tube for his nutrition (though not all of it but it is necessary for his overall health).

Bentley is currently in End Stage Chronic Kidney disease and he needs a kidney transplant.  

Bentley was born 5 weeks early, his mom Heather was induced because Bentley was no longer urinating in utero and her amniotic fluid was dangerously low.  Bentley came out a fighter at a whopping 7lbs 1oz (yes he was really 5 weeks early).  He needed every ounce of that weight for what was in store.  Bentley within the first 12 hours of birth was driven from EMMC in Bangor, Maine to Maine Medical Center in Portland, Maine via ambulance to meet with his team of Nephrologists (kidney docs).

Bentley had his first surgery at 4 days old which created two "bullet like" holes allowing him to urinate through his lower abdomen into his diaper.   The day after Bentley stopped breathing due to the anesthesia and pain medicines not filtering out of his system (another side effect of chronic kidney disease).  He was stabilized over the next few days and then on Feb 14th had his second surgery inserting a peritoneal catheter which allows for his dialysis.

By the beginning of March Bentley's blood pressure had skyrocketed and he was put on blood pressure meds (normal in kidney patients but no less scary).  March 20th Bentley went in for his 3rd surgery to have a G-tube placed in order to supplement his nutrition.  Being both a preemie and a kidney patient meant he got tired during feedings and was not able to take all of his nutrition from a bottle.  The G-tube was key in making sure all of his electrolytes etc. were and are balanced. 

On March 26th Bentley was allowed to go home under the condition that he travel to Portland to see his team (a 2 hour drive) every week in order to have an exam and blood work done to monitor him very closely. 

On April 2nd Bentley was admitted for his 4th surgery a revision of the vesicostomy (urine site) his bladder had been pushed outside his body and needed to be returned to "normal."  After this procedure Mom was told that Bentley's kidney function was less than 10 percent.  With this information peritoneal dialysis and dialysis training began on April 7th, he was 2 months and 1 day old. They trained for a week and were release to go home with a dialysis nurse on April 12th. 

April through June became wonderfully "normal" for Bentley and his family.  Their visits to the doctors moved from once a week to biweekly.

Then in June Bentley developed a hernia in his abdomen due to too much fluid and pressure from the dialysis.  He was hospitalized from June 23-25 for observation, he was discharged until the team could come up with a plan. Bentley was readmitted into Maine Med on July 3rd, during this surgery they closed his vesicostomy reconnected his urethra (allowing him to urinate "normally") and fixed his hernia. 

From July to October things were back on that wonderful "normal" path, Bentley was growing wonderfully he is exactly where he needs to be right now mentally and physically.  His development is on par with his peers.  However much of his life revolves around medication management and as he gets older and grows this continues.  His bloodwork needs to be continuously monitored (although he is now up to monthly visits with his team) and things need to be kept as stable as possible.  

On October 28th Bentley went to Boston Children's hospital in Boston, Ma (a 4 hour drive from home without traffic) to meet his Kidney Transplant Team and start the process of finding him a donor and getting him a new kidney.  This means in the near future Bentley and his mom will need to take biweekly trips to Boston.  Bentley needs dialysis nightly for a 12+ hour period that means if they once they get to Boston and move through their day of appointments they need to stay in Boston in order for Bentley to have his Life sustaining dialysis treatment.  Bentley and Mom have to stay a minimum of one night in Boston for each visit due to the time frame and necessity of dialysis.  

On October 28th of 2014 the doctors informed Mom and Family, Bentley will be having a Nephrectomy (both of his kidneys will be removed).  Once this happens Bentley will no longer urinate, dialysis will be even more of a necessity than it is now and the recovery period from this procedure is 6-8 weeks, a minimum of three of which he and Mom will need to stay in Boston near the hospital to be monitored closely and to maintain the levels that are so important for his body. 

After Bentley has healed if he has a living donor (there are 4 family matches right now that are the best possibility) the transplant process will move forward.  If Bentley does not have a living donor but he is at all "normal" levels and healthy by the team’s standards he will be listed on the recipients list for a kidney transplant.  When Bentley receives his kidney he will need to stay close to the team in Boston for up to 3 months.  Once he has the all clear he will still need to be traveling both Portland to see his kidney team there for care management but also back to Boston to see his transplant team to maintain his overall health and limit the possibility of rejection and other complications that can occur with a transplant.

Bentley and his mom could really use your support. Making a donation will give his mom one less thing to worry about, it will allow them to travel back and forth between Bangor, Portland, and Boston, Ma.  It will allow them to find safe reliable spaces to stay close to the hospital, provide food to mom while she is caring for Bentley.  Along with this it will allow mom to purchase prescriptions without stress (if his prescriptions change or are adjusted they are not always covered by insurance if it is too close to a similar recent purchase).  The money will help Bentley get to these out of stae appontments as well as Portkand a 2 hour drive as well as have all of the things necessary when going through this kidney transplant.  Transportation and travel costs as well as safe accommodations will not be a worry for his mom with your help, and anything helps.  

Thank you for any and all help you can give the support is much appreciated.
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Denise Hughes 
Bangor, ME
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