Wednesday, June 18, 2014

Sara's medical update

Last December we met with Sara's urologist and developed a plan for her to have surgery this summer to repair her renal reflux and remove the remaining stones on the same side. In preparation for that, I sent a letter to the urologist in mid-April expressing some of my thoughts regarding tests desired prior to surgery. After a month went by and I didn't hear any feedback, I called the office to discover they had moved locations and never received my letter. I faxed it. I waited a week for the feedback that he wanted to schedule an appointment. By now I was feeling the stress that the surgery schedule was filling up and we would not be able to accomplish the "plan" before Kindergarten started. Another week went by before he was able to meet with us last Friday.

The conversation started by the doctor asking us what we have been told over the past 2 years regarding the possibility of a kidney transplant. I responded that Sara's nephrologist has told us all along that he would monitor her every 6 months indefinitely and if her kidneys cannot keep up as she grows, then a transplant would be needed.

He answered "Her kidneys will not keep up when she is an adult. She will need a transplant."

Shannon spoke for us when he said that was the first time it had ever been presented that definitively to us. "If" was now off the table, replaced by "when." Quite frankly, it took my breath away. I have a growing list of moments that I have experienced with doctors that are like a frozen moment in time which I can close my eyes and it lives within me like it was yesterday.

The challenge any doctor has in these situations is assessing each family and determining what level of communication is appropriate with them. Obviously they want to present things in the most positive light possible. But in some cases, by doing that, miscommunication can happen. We certainly feel that way and that things were almost misrepresented. We made it clear that with all we have been thru, we are a family that can not only handle brutally honest communication, but we welcome it.

At this point, the plan is to do nothing. Watch and wait. If he does surgery to fix the renal reflux, it will make the passageway smaller for any future kidney stones to pass and then place her at risk for an emergency situation. If he does surgery to try to remove any kidney stones, there is no guarantee he can get them all. And her kidneys are so thin, the surgery would be extremely risky and there is a good chance the kidney would not survive the surgery. Since a transplant is needed down the road, there is no point as long as her health is doing well. There is a concern that since we don't know why or how the stones started, her body could make stones in a new kidney, as well.

I am well aware that my God is big enough to heal her. We will never stop surrounding her in prayer for that. But I also know that along the journey, He will continue to guide us and protect us and provide for us and bless us. God could say yes to our healing prayers and He could say no. His answer will not determine my level of faith. I have no expectation for Him to meet my request and I refuse to throw a temper tantrum if that does not happen. Our intention as a family is to just live each day until we come to a road where decisions have to be made.





Baby girl, you are an overcomer! Wherever this journey leads us, I will always be by your side holding your hand.

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