Apr 27, 2007 Update on Lily
// April 27th, 2007 // Lily Rush
We just returned from Boston – exhausted, but grateful. We spent yesterday at Children’s Hospital of Boston, including a long meeting with Dr. Hiep Nguyen. Dr. Nguyen is the Co-Director of Robotic Surgery and Assistant Professor of Surgery at Harvard Medical School. He specializes in kidney cases such as Lily’s, and we learned a lot. The most important news thus far is that he thinks there is a 40 to 60% chance that she could outgrow the condition. In January when she was originally diagnosed, she was given almost NO chance of outgrowing this condition!
At CHB, they maintain an enormous database of patients with Lily’s condition (over 4,000 kids). By comparing patients, they can ascertain with much more certainty what the next step should be. They gave her a DMSA (a nuclear test on her kidneys to measure effectiveness), and found that her right kidney is not functioning fully, but that the left kidney has compensated for it, and we should not anticipate future problems.
The next step is… waiting. Dr. Nguyen recommends that we wait until January 2008 – a year from the original kidney diagnosis – to test the reflux again and measure progress. By then, they will be able to know whether the body is healing on its own. If she winds up with a urinary tract infection between now and then, the plan will change, but until then we’re not doing any damage in the delay.
Lana and I left Boston with a lot more peace of mind about waiting, a better understanding of kidney reflux, a better reason to wait, and a lot of gratitude for a much better outlook and some hope for no more surgery. Thanks for all your prayers for our Lily! We’ll keep you posted!
