Coming Home

We were home. All four of us, together at the same house. It was wonderful, but at the same time petrifying. This was nothing like when Brooke came home. This was a baby that I felt might just break. Or die. As I said before, I had no experience in the medical field, and over the past three weeks I had been inundated with medical jargon. Chronic renal failure. Colostomy. Stoma. Creatinine and BUN were two terms that were going to rule my life – for as long as Derek remained alive. Creatinine measures the kidney function, and BUN measures hydration level. I had learned that very quickly.

Derek could only get a sponge bath due to the colostomy. Submerging him into water was too risky for fear of infection. And let's talk about the colostomy. A piece of intestine was brought out through an incision in his abdomen. A bag is then placed over the stoma and adhered to the skin with a sticky, putty-like substance. The stool then collected in the bag, and the bag got changed daily. I don't know how long it took me before I didn't gag when I had to change that bag. And then the skin started breaking down around the stoma due to the acid in the stool. His skin turned blood red, raw. And he would scream from the pain when I changed the bag. And then I would cry.

Meanwhile, Brooke was adjusting as well. She was two when he was born, so there was basically nothing she could understand about her baby brother. But she loved him right away, and never showed any jealousy.

Derek's kidneys were functioning, but not properly. This meant toxins were building up in his body because his kidneys couldn't flush them out. So, as part of the disease, Derek was nauseous and vomited a lot. He was on a special formula that we had to mix up, a high-calorie mixture. With all the vomiting, it was hard for him to gain weight. His creatinine level had to be monitored very closely, and we had been given an appointment to go back to the hospital clinic for a checkup three weeks after he had been discharged. Those three weeks crept by and it was time to go back to Miami.

Once at the clinic, Derek was checked in, weighed, his temperature taken and we were ushered into an exam room. His team of Nephrologists (kidney doctors) came in and we went through the initial small talk and they examined him. Apparently he hadn't gained much weight. Then they wanted to draw some blood. This proved to be a difficult task, as his veins were so tiny and he had to be stuck numerous times. All the while they tried, he was screaming. And I was crying too. This was my newborn son, having to go through this ordeal. How unfair this was, how terrible for this little baby to have been born into this pain. My heart was just breaking.

After the blood had been drawn and Derek was back in my arms, it was then the doctor landed the most crushing news of all. There was no cure for Derek's disease, we were told. The most we could ever hope for would be a kidney transplant, but the chances of him making it to the point where he could receive a new kidney were basically slim-to-none. He would have to weigh at least 22 pounds to be able to receive a new kidney. And Jackson Memorial had never done a kidney transplant on a patient that young at that point. Then the doctor said to me, “Babies born with this condition don't make it very long. Just enjoy the time you have with him while he's here.” And he said it so nonchalantly. I couldn't believe what I had just heard, and when the words registered in my brain, all I wanted to do was run. There was not one more thing I was going to listen to that day. I turned around, said we were leaving, and out the door I went, Derek in my arms and tears streaming down my face. I don't know how I did it, as every part of my being was numb. They said I was going to lose my son.