Most people are familiar with reflux. It’s super common in babies and pregnant ladies. It’s medical term is Gastroesophageal Reflux Disease (or GERD) and it’s a condition where the stomach contents are not properly digested, but end up flowing back up the esophagus. The stomach acid wreaks havoc on the esophagus and is very painful. Nathan has a severe form of this that we are struggling to control well. His recent scope revealed that his esophagus and duahdonum (first part of the colon) are severely inflamed. Preliminary blood work reveals that his body is not processing four different types of sugars properly. We are waiting to learn more about treatment for this extremely rare condition and in the meantime have started him on a medicine called Carafate to try to help calm down the inflammation. But Carafate is bad for kidney kids. It’s a delicate balance right now between helping our little guy feel better and protecting his kidney. We’re in the same boat with Ibuprofen which seems to do wonders for him but is hard on the kidneys, as well as the stomach frankly.
He also has another type of reflux many people are not familiar with. It’s called Vesicoureteral Reflux, which is a different type of backward flowing of liquid in his body. It’s the urine in his bladder refluxing back up into his kidneys. Since he essentially has only one functioning kidney we are concerned about the damage this urine could be causing to his one good kidney. On Wednesday when we were in Aerodigestive Clinic he got the attention of all three specialists at the same time by his ongoing screaming, crying, and breath holding. In the middle of a prolonged fit of pain he was promptly escorted over to the imagining department for his third ultrasound in the last two months. We were trying to catch a correlation between the screaming fits and the urine reflux. It revealed that the fluid in his left (good) kidney may have worsened since October. The theory is that perhaps it is causing pain to the encapsulated kidney when the urine goes back where it’s not supposed to go.
We don’t know. We just know that he’s not in a good place right now. The liquids in this boy’s body are going in the wrong direction. Therefore, it feels like everything in his world–and our world–is going in the wrong direction.
It’s hindering his desire to interact with his family and caregivers. It’s affecting how motivated he is to do therapy. He’s lost two pounds that he can’t afford to lose. He isn’t crawling around and as curious as usual. The kid barely noticed the Christmas tree go up. I thought for sure he would have his slobbery little hands all over the ornaments in no time. He mostly just sticks his thumb in his mouth, his arm around the back of his head, closes his eyes and curls up on someone’s lap to shut out all of the pain. He’s backward sliding because we can’t get things in his body going the correct direction.
This is all we know right now. We have discussed some more treatment plans to help move things in the right direction, assuming these reflux issues are indeed causing the pain. I can’t say I’m excited about them because they place an even heavier burden on our family to execute. But we are committed to getting things moving in the right direction. This reflux business isn’t working for any of us.
Though its waters roar and foam, Though the mountains quake at its swelling pride. Selah. There is a river whose streams make glad the city of God, The holy dwelling places of the Most High. God is in the midst of her, she will not be moved; God will help her when morning dawns. – Psalm 46:3-5
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