Update with Transplant in the Future

Our family made the trek up to Cincinnati last Friday for another "marathon day" of back to back appointments. We were doing repeat bladder testing as well as meeting with Owen's nephrologist and urologist to get an idea of what to expect in the next year or so. The last time we had met with urology we left very discouraged and in the dark about what was to come in Owen's care.

Yesterday's appointments went much more smoothly and we left feeling confident in the physicians making decisions for Owen.

The bladder testing that was done for Owen showed us some answered prayers. Upon our last visit we found out that because of the extensive damage to Owen's bladder in utero, it could only hold about 30ml, or the amount of a newborn. Owen's bladder medication was increased in hope to allow it to stretch and grow. Well, this time his bladder held about 2X more than 4 months ago! Yay! This was wonderful news, however his bladder and ureters (tubes that connect the bladder to the kidneys) are still severely damaged and reflux back up to his kidneys. His ureters are extremely stretched out and floppy. They cannot "shrink" or go back to normal size, so the reflux is likely to always be a problem. The reason this is a problem is because after transplant, these damaged ureters can lead to infection in the new kidney.

In order to create a "safe environment" for transplant Owen is going to need surgery in the next month or two. This is not exactly what we wanted to hear. However, Owen's new doctor assured us that this is a necessary step toward transplant. We have been blessed with a urologist who is very confident in his decision, and has poured over Owen's charts and records, assuring us this is the best decision for him now.

The surgery Owen will be having is called a vesicostomy. This surgery requires the surgeons to bring part of Owen's bladder wall to the surface of his skin, to allow it to flow freely and no longer be under high pressures, causing reflux to his kidneys. The vesicostomy will be low enough that his diaper will cover the opening, but we will be seeking out help from other parents as far as the best techniques go in keeping him dry, as it is at the top of the diaper and not in the absorbent part.

During this surgery Owen will also be receiving a g-tube placement. This will be a tube placed directly into his stomach from his abdomen. This will allow us to get ride of that pesky NG tube in his nose! Owen's doctor had hoped he could get by without needing a g-tube as he does better "mouth wise" than many other kidney babies, but relying on him to take the ample amounts of fluids and meds after transplant will be asking a lot from a babe who doesn't eat by mouth!

We are thinking the recovery time will be about a week or so in the hospital. Because of the g-tube placement in the abdomen, we cannot do dialysis for a couple of nights. This means Owen's feeds and fluids will be highly restricted and labs will be closely watched. Once we resume dialysis and feeds, it's a very slow process to allow for adequate healing.

Owen's urologist would like to allow 8-12 weeks of total healing time before transplant takes place. So we are hopefully looking at January or February as our big month! Before that, we have to find a donor though. We are in the works of testing 3 people right now. So far we've gotten great news on our dear friend from church and Michael's sisters will be getting their blood work done in a couple of weeks. Please continue to pray that the Lord will reveal the perfect kidney to us. That we will have complete peace in knowing that our doctors are making wise decisions for Owen and preparing his body for a new kidney.

Owen's nephrology  visit went exceptionally well. :) We are so thankful that he is doing so well on dialysis and his body is responding to the treatment. His labs looked so good that we were able to decrease his therapy time to 11 hours! yay!

Our appointment was 2 days before Owen's birthday. He is so loved by his nurses and doctors at CCHMC that they presented him with a balloon, cake, and present!

We so appreciate the amazing care Owen receives at CCHMC. We know that he is in good hands, and he is loved and cherished by his caregivers! Please continue to be in prayer for Owen, as well as our doctors. That the Lord will bless the hands of the surgeons and work through them during Owen's surgery. The surgery will be scheduled for late September/ early October.

Owen's actual birthday was this past Sunday. We had a wonderful family day together. Mommy and Daddy let Owen open presents and enjoy his cake that he didn't finish on Friday! He had SO much fun and was a complete mess!

We are so blessed to have Owen in our lives. He truly makes life fun! Thank you for your prayers for Owen. We know that he is on the minds and hearts of many, and we could never express our gratitude for all those storming the gates of Heaven in Owen's name. We are claiming this victory of healing, now. We know the Lord is holding Owen in the palm of His hand and He takes great delight in blessing His children.