Chronic Kidney Disease

My last post was Beckham's birth story that I wrote shortly after he was born. And since this is Beckham's blog I thought it was necessary to include his arrival and crucial first few weeks of life. Reading back on it was so interesting for me because it took me right back to those thoughts and feelings at the time, which were mostly confusion and fear. Now that it has been a year my feelings are so different. It has been such a learning experience for our family but I now understand and completely agree with the statement "knowledge is power." We were so scared in the first few weeks of his life because we didn't understand his disease, we didn't know how or why it had happened, and we didn't quite understand what this meant for him.

Beckham has Chronic Kidney Disease. On a scale of 1-5 (5 being the worst) he is a level 5 and has been since birth. His kidneys a whole year later are functioning at about 12%. He will need a kidney transplant sometime soon but it is not critical yet and he is actually not quite big enough to get one just yet so we pray they hold on until he is. To recap this past year, Beckham has been in the hospital about 4 times. Because his kidneys don't work correctly his body gets rid of all the water and salt so he pretty much pees constantly; therefore he gets dehydrated very easily. Once he is dehydrated it throws off all his electrolytes (which we give him everyday) and sends his body into a spiral of constant vomiting. He was hospitalized for that twice. He also is very likely to get UTIs. He has bladder reflux which means that the urine in the bladder goes back up to the kidneys which is what caused the major damage in the first place. We were told from the beginning that if he gets an infection his kidneys are done. Well he got one when he was only a few months old, but we were very blessed that it didn't cause any further damage. We caught it pretty early but we know that it is through the faith and prayers of our family and friends that he remained stable.

Eating for Beckham has been a constant battle his whole life. There are so many toxins in his blood that he often feels sick and doesn't want to eat anything. This is normal with CKD which is why most kids end up with a feeding tube. At about 8 months old we couldn't get him to really take anything by mouth. And what he would take he would throw up a few hours later. He wasn't getting the nourishment he needed which would affect his development if we didn't do something about it. At 8 months old he had his surgery for a G-tube. It was so hard for me at first but I am so very grateful for it now. He has gained so much weight and is actually my biggest baby at a year old! It was definitely a learning curve but it has become a way of life for us now, even his brothers help him get untangled and move his backpack when he rolls too far away from it. It is a part of him now and a very important part of his story.