Nephrologist appointment

Yesterday we had Dawson's long awaited Nephrologist appt. This was supposed to be done in may but it fell during his wish trip. The Dr was great and very helpful. He did a urine collection when we first got there that showed blood and protein in his urine (this is no surprise since he has had a UTI since birth). The dr was quite concerned that despite a year long round of antibiotics,hospitalization for i.v antibiotics, and another 3 month run of oral antibiotics he still has this infection. We talked a lot about options (a semi permanent cath until the infection clears,multiple tests ext). So we decided that doing the tests first to make sure no damage has been done to his bladder/kidneys is the best place to start. He has 4 different tests coming up in aug including a VCUG and another test that will take 8 hours to do. They are repeating the VCUG to see if there is scaring inside his bladder (i guess this is better that ultrasound) and the 8 hour dye test will tell if he has any kidney damage. Hopefully they are both scar and damage free and we can avoid the cathing. On top of all this he thinks he may have a tethered spinal cord so he got him in for an emergency MRI for tomorrow and an appt with Neurosurgery for next Thurs. He said that the pain in his legs could be from that on top of the uti's (both signs of tethered cord). We have an appt for pre op today. So our schedule for the next few weeks will be very busy,I will update after each appt.