A Lil' Boy's Journey to Live….

Update .. ❤️

Update to Monday’s ultrasounds. The ultrasound that was ordered to check the blood vessels in the abdomen and pelvis unfortunately wasn’t able to really be done. The radiologist pretty much said that’s just something they don’t do. The reality is that when Riley had his CTA in March it should have covered abdomen and pelvis but it didn’t. Someone dropped the ball. The ultrasound was ordered to try and eliminate the need for another IV. Ultimately it seems that another CTA will be ordered in the near future, but still waiting to hear back from Dr Drant.
The renal ultrasound still showed the cysts. All measuring larger than the previous ultrasound .. along with new cysts. That being said there is no way to prevent or slow the growth of cysts. We just watch, and treat any problems they may cause. One issue could be blood pressure, but Riley is already on a BP med so that’s stable. We will check the protein in his urine the next time we do labs. It could be decades before they cause a problem. (Fingers crossed) Since there is no treatment .. if, way in the future, they overwhelm his kidneys we could then discuss dialysis/transplant. Not today .. and hopefully not ANYTIME soon.

CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜


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