On Thursday of this week Chase spent all day at the children's hospital clinic. They performed an echo cardiogram, kidney ultrasound, blood work, urine tests and he seen his Nephrologist and GI doctors. It was a long day for him and he was exhausted, but done such a great job! We are so thankful that both his echo and ultrasound came back good!
His nephrologist discussed blood pressure meds again as his BP was 124/78...very high for a child his age. As we were leaving the hospital, he called Ryan's cell and had us to come back in for additional blood work. It will be next week before we get some of those results. Pending the results, they will make a decision with the meds. The problem with them is the side effects. They can cause dehydration in Chase's case because he has trouble staying hydrated. They can also be sedating and since he has just learned to be more active, we really don't want to set him back. We had a long discussion about how the cells in his kidneys are not responding properly to the aldosterone...his explanations got quite complicated, but I feel like we learned a little. He is doing some research on the saltyness of Chase's skin and thinks he may have a PHA mutation that genetics have not yet found nor know how to test for.
The visit with GI went well. We talked about his ongoing bloody stools and inability to eat normally as well as his gagging and swallowing problems. His doctor is concerned the ulcers in his colon may still be bleeding and she has decided to do a more invasive colonoscopy than the one that was performed a few months ago. We talked a lot about the preparation for the procedure as the last time it was a horrific process that caused Chase a lot of pain. She did mention to us the possibility of him having ulcerative colitis or Chron's disease, but I am not going to worry about that as I am giving it all to God.
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