Eli had just turned 9 weeks when we took him to the doctor for his 2 month check up. I had noticed that he was looking kind of yellow. I had mentioned it to Charlie, my husband a few times. I didn’t think it was any cause for concern, because babies have jaundice.
At Eli’s appointment, his doctor seemed concerned. She told us to go to the hospital for blood work. At that point I knew in my gut something was wrong. I told Charlie and he said “I’m sure that he just needs some sun.” I knew that wasn’t the case. I embarrassed Charlie by asking the doctor to please explain to my husband that this could be serious.
At the hospital, Eli had his first blood draw. I cried like a baby. Little did I know, my baby would have blood drawn hundreds of times and it never would get easier.
We left the hospital and I had to get things together for Jakes Halloween party at school. I tried to push everything about Eli into the back of my mind, so that I could focus on Jake.
At Jake’s party, our pediatrician called. She told me that Eli’s liver numbers were off the charts. She was concerned because this could be liver disease. I was shocked. The rest of the party was a blur.
After the party, I called my family. We decided it would be best to take Eli to the ER at Kosair Children’s hospital in Louisville, KY. I will never forget that night. Everything about it is still so vivid and I still have nightmares about it.
They decided after running more tests that Eli would be admitted. They tried so many times to get an IV in Eli. He was so sick that he had no accessible veins. I was crying to the point of throwing up. I couldn’t watch anymore. I will forever be thankful for Sharon , my mother in law and Charlie for staying with Eli until they got the IV in him.
I went outside, called my mom and smoked my first cigarette in over a year. I didn’t know what to do. My worst nightmare was becoming a reality.
During my pregnancy, I obsessed over things that potentially be wrong with my baby. I had never read or heard about a baby being born with liver disease.
Of course, the whole time all of this was going on, I was googling pediatric liver disease. I kept reading about biliary atresia. It discribed Eli perfectly. I didn’t mention this to my mother in law or Charlie, only to my mom. What I read, told me that kids with this, don’t make it past the age of 2 without a major surgery or a liver transplant.
Next, this pretty doctor with short, dark hair came in. I will never forget her face. She sat down and explained what was going to happen. She said “the worst case scenario, is that he has biliary atresia. Currently, we are trying to rule everything else out, like viruses and hepatitis.” I looked her in the eyes and I said “what do you think it is?” She answered “Biliary Atresia”
Before that moment, I believed in God. We just didn’t have a very close relationship. At that time, I started to beg him for things. I even wrote some of my prayers on paper. I begged God for my son to have hepatitis . I begged him to please let me trade places with Eli and I begged him to please let my baby be okay.
After we were admitted, they hooked Eli up to a lot of monitors. His heart rate monitor would beep every time he cried. I had worked in a hospital for a year before this. The way things worked weren’t new to me. But being on the other side was nothing I could have prepared for.
A few nights later, Eli began to run a fever. It got up to 104.5. I was scared. He kept moaning like he was in pain and his heart rate was in the 200’s. I began to panic. They kept telling us to keep cold wash rags on him bc he couldn’t have Tylenol and he was too young for ibuprofen.
It was a weekend night and no one was doing anything to help. I kicked a rude resident out of the room because she refused to do anything. I then went to administration. This man scared me. He said that Eli had cholangitis and that he should have his Kasai procedure immediately, but administration was just being difficult. I then said that I wanted to move him to another hospital and he told me that Eli might not make it to another hospital.
When he left the room I lost it. I was holding Eli and sobbing. My mom looked me in the eyes and said ” you don’t give up. If you give up, he will give up.” It was then that I got pissed. I was pissed at God, I was pissed at my husband and I was pissed at the world.
They switched Eli’s antibiotics and the next day, his fever was under control. They did a colangiogram on Monday and determined that Eli did have biliary atresia. They told us that he would have surgery the next day. This surgery would buy us time. They would go in, remove Eli’s gallbladder and attach a piece of his intestine to his liver to create a drain. They told us that if it could buy us a year, the outcome of transplant would be much better. This is because Eli would be bigger and stronger.
Leaving your baby before a major surgery isn’t something that can easily be put into words. You feel completely helpless. That was the worst moment of my life. The first person I saw was my sister. When I looked at her, I broke down. I went to the bathroom to compose myself and went back into the waiting room. My entire family was sitting around a big table. I can’t thank them enough for all of their support during that time. My sister brought the cloth so that we could make a tie blanket for Eli. Something about using my hands to make something made me feel better.
After 5 hours, they took Eli to recovery. The surgery went well. Later that night, we were transferred to the ICU so that he could be monitored more closely. He looked pitiful, but he was doing okay. He slept a lot and I wasn’t able to hold him for a few days. I just remember standing by his bed and watching him sleep.
After 2 days, we moved out of the ICU and Eli continued to do better. We wouldn’t know for several weeks if the kasai was successful or not. All we could do was pray. After a few more days, we were sent home. He was on a lot of medicine and a new formula that was $50 per can. I just prayed that I could do what needed to be done for him. Little did I know that his infection hadn’t cleared up all of the way, and I didn’t know what we were in for.