After two days of not holding my son, I finally get to hold him. But soon came the first car ride and it wasn't to go home.
After test results came back regarding his jaundice, they took off his super hero eye mask, put away the bilirubin light and let me hold my son. But I only had an hour from the time they told me that I could hold him until the transfer team came to take him to Scottish Rite.
I wasn't loving the idea that I had to let my son get transferred to a new hospital in an ambulance. With every second, my nerves were jumping out of my skin. I went home, got my husband, and we went to Scottish Rite. We were instantly comforted when we arrived. He was there not too long before we arrived. They had already gotten him in his bed space and were ready to explain to use everything that they were thinking and getting their tests for. I would soon see the hallway below for three weeks, everyday, until he was ready to come home.
We were a little taken back by how amazing this hospital is. It truly caters to kids, sick or healthy. I could bring my daughter here to visit her little brother and confidently know that while family was visiting, she would be entertained with the many things kids can do around this hospital.
We will have to get surgery to fix his small bowels
Meeting his new Doctors
The doctors here are so much better than we expected. We met the first doctor, and he thought he had seen us before because he said "nice to see you again" when in fact we hadn't even met the man. But he told his on his X-Ray that he saw some slight dilation with his kidney and that he wanted to get a repeat X-Ray in about two to three weeks to make sure the swelling went down. They attributed this to his Barium Enema so it wasn't too concerning and now he is peeing normally so I doubt there are any other concerns about his Kidney.
We met our nurse for the night and she was great. The one thing that really struck me was that she asked us how we liked to learn. We told her hands on with as much information as possible. From that point on, we met more and more of his doctors or at least the doctors who would care for him and the first big step was his Hirschsprungs Disease Surgery to fix his small bowels. It was no surprise to us that he would have to have surgery to fix his small bowels. Before we got transferred, I googled like a mad woman to find out more about Hirschsprungs Disease. Hirschsprungs, for reiteration, is a condition of the large intestine (colon) that causes difficulty passing stool. His poor little bottom wasn't working right and he had such pain passing gas and he hadn't really passed stool at that point.
We spoke with Dr. Bleacher, his surgeon and Chief of Surgery, about the procedure and I pretty much told him how the surgery would go and once he knew that I knew what he was going to be doing, he told me that I was absolutely correct! My worries went away slowly once I realized what kid of surgery he would be getting and how the procedure would be going. And not to mention that the Chief of Surgery was going to be doing the surgery on my son. We were hoping for a sooner date, but they had set up his surgery date for Tuesday morning and that was that. We were told we would meet the anesthesiologist the morning of and then they would take him for the three hour max surgery.
Some other complications
Not only did we have to deal with Downs, Hirschsprungs, a dilated kidney, and feeding issues, we were soon going to be jumping into a pool of other possible issues.