The Thomas Crew

The Thomas Crew

Wednesday, February 27, 2013

Future plans for Gavin

I was blown away by the wonderful MDs at Radys children hospital yesterday. I was so pleased with all the attention to detail for Gavn. I wanted to update everyone on the plan! Yesterday we visited with endocrinologist, urology and nephrology. The visit with endocrinologist was very informative. We will be running many test to determine if Gavin has a endo problem like many believe he does. That doctor also referred us to a genetic specialist to help us better understand Gavin's diagnosis. Next was the urologist. For those that haven't been following we did all the test and procedures in Utah in order to prepare for major surgery once we got here. Yesterday we moved forward and have scheduled his first surgery on march 11. His second part of the surgery will be done 4 weeks later in April. The first surgery will be to reconstruct his right ureter and reconnect it to his bladder. He will no longer have a suprapubic catheter once this is completed. There are many risk to this surgery and I will be calling on lots of prayers that day. The major risk is that his only kidney will completely fail immediately following surgery. He will be in the hospital a few days and followed closely by the team. If this happens he will be put on dialysis and transplant list. I met with the transplant team yesterday and I'm confident in the care he will receive. The risk is very real and scary but surgery needs to happen so we Pray! There is also a chance since his bladder has never been used that it will not work. If this happens we will have to use catheters to drain his bladder. He will have another surgery after that to fix his hypospadias as long as his bladder is working correctly. Now on to nephrology. We don't know yet if he has had decline in last month. We are waiting on lab results. It is going to be hard to determine Gavin's kidney decline until we can monitor labs over the next 2 months. We don't know exactly how much time we have right now. We are praying everything will go ok with surgery and we can preserve his kidney function as long as possible.

Today I am sitting in outpatient procedures waiting for Gavin's BAER test to be done. Hopefully we will have those results to share in the coming hours. Thank you for all your continued prayers for my Bulgarian Prince!

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