Wednesday, September 18, 2013
On September 5th Kanaan had an ultrasound on his kidneys to determine what exactly was going on. It turned out that he did not have the horseshoe kidney, instead he has 2 kidneys, but they are about 50% smaller than they should be and the adrenal glands are larger, making it appear to be a horseshoe kidney. Also he has bright spots on his kidneys that aren't where they should be. His actual diagnosis is Kidney Displasia, but that is kind of broad general term. His blood work showed that his creatinine level was elevated, but since his electrolyte levels were normal, it isn't a concern. The creatinine isn't a toxin, it won't hurt him being high, it just tells the kidney function level. If it stays high and other levels start getting out of whack then we will start to be more concerned. At some point Kanaan may need dialysis and a kidney transplant, but right now we are trying to keep his kidneys working as well as possible for as long as possible. The doctor said that some babies with kidneys like his need dialysis immediately, Kanaan's are functioning the way they need to be for now, we just don't know for how long. Eventually we may need to add certain medications to his milk that condition the milk to make it the easiest for his kidneys to process. That process would be adding the meds to the milk, letting it sit for a certain period of time. The "bad" things would fall to the bottem and then we'd scoop off conditioned milk from the top to give to him. At this point though we don't need to do that. Once he starts eating baby food, we'll meet with a dietician to discuss what he can and can't eat to keep everything in balance. To help keep his electrolytes in balance he is on a sodium supplement, and a medicine to control the acid in his blood. We also add a special high calorie formula powder to his breast milk to help him gain weight. In the hospital he had a little trouble gaining weight, which is common for his condition. Since we have to fortify his milk and also mix his meds in it, I am pumping exclusively and we give him the milk in a bottle. We have to keep track of how much he is eating verses peeing out and it is impossible to know how much he gets by nursing. The important thing is that he gets the breast milk, if it's better for him to get it in a bottle than that's what we're going to do. It actually makes it a little less stressful, just because we know he's getting what he needs. He is gaining weight well, on the fortifier. The doctors said he looks and acts just like any other normal baby, he's just a regular baby with a kidney condition. We just have to keep a close eye on any changes in his eating habits, or if he starts to swell. Also if he gets sick we have to take him to the pediatrician immediately to have his blood levels checked to make sure his kidneys are doing ok. We really like the nephrologist, Dr. Seifert and his pediatrician Dr. Raad. They both are very knowledgeable and very easy to talk to. We feel that we can ask them any question without feeling like it's a dumb question and they are very reassuring, yet truthful with their answers. At this point we really are not sure what the future holds, but we are just taking it one day at a time. We meet with Dr. Seifert on Wednesday for lab work and a follow up. His creatinine level was starting to drop a bit as we were leaving, and I'm curious to see if it continues in that direction. The normal creatinine level in a newborn is 0.3-0.6 and Kanaan's was 3.1 and then dropped to 2.5 before we left. It's good that it's going in that direction, but a change from 0.3 to 0.6 is more drastic than a change from 3.1 to 2.5. The higher the level, the more change is necessary to make much difference. We're praying that his levels remain stable or improve, that his kidneys will continue functioning as well, if not better than they currently are, and that he continues to gain weight and thrive.