What is this life? 

Sometimes I think, what is this life I’m living?? 

Today for instance, has been crazy to say the least. 

It’s almost 2 pm and I haven’t had a chance to take a shower. I’m writing this now, instead of showering because I am laying beside Eli while he naps. He will scream if I get up.

This morning, when I picked Jake (my 5 year old son) up from his dad’s, he was covered in hives. He had been coughing all night because of his asthma, so his voice was hoarse. I took him straight to the doctor, 8 am, no shower and barely any supplies for Eli. 

They said that he needed Benadryl immediately, so we went to Walmart to give him that, then to Kroger to pick up his prescription. 

Then a family member calls to tell me that I need to make a plan for Jake when Eli has his transplant. They proceeded to tell me that they couldn’t take care of him because they had to work. At Eli’s transplant evaluation, their exact words were, “we will take care of Jake while Eli has his transplant. So don’t worry at all about that.”  I guess they changed their minds. They said that Jake needs to be in daycare full time. HA! Are they going to pay for it? I’m a stay at home mom because of Eli’s condition. My husband works 2-3 jobs to make up for me not working and to make ends meet. We can’t afford $500 a month for daycare, especially when Jake will be starting kindergarten in less than a month. 

When families go through things like this, usually everyone helps and is there for each other. I thought that was true for us too. 

Anyway, when we got home, both kids were crying for lunch, Jake needed a bath and Eli had a blow out diaper, which is still on my shirt. 

I need to use the bathroom but if I get up, Eli will scream.  

Really? What is this life? 

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Life on the transplant list 

Every time the phone rings, especially if it is at night, I hope that Cincinnati is calling me to tell me that there is a liver for Eli. 

Some days I don’t think about it much, and we just go on about our lives. Other days it hits me… My son is going to have a liver transplant. It’s inevitable. I pray for that day and dread it at the same time. 

All of this may be a little bit easier if there was a known cause for BA. Late at night when I’m alone with my thoughts, I still think, “why Eli?” It isn’t fair. No parent should ever have to watch their perfect, innocent baby go through anything like this. Babies don’t understand and they don’t deserve to be sick.

Sometimes when I’m out with my boys running errands, people ask if Eli is okay. Others ask if they can pray with us or for us. I can see the way they look at our little family and they feel sorry for us. I don’t want anyone to feel sorry for us. I just want to have a normal day out with my kids. 

I still haven’t been able to bring myself to pack our bags for when we get the call. I don’t know why. I’m usually a prepared person. Every time I think about doing it, my stomach turns. I guess it’s because if I pack, it means that we are actually going to have to do this. Packing means that I will have to think about being there during that time and I’m still not ready to face that. I don’t think I ever will be. 

Let’s make a change!!

It bothers me that infants are only required to have check ups at 2 or 3 days, 2 weeks and not again until 2 months. 

If Eli had a check up at 4 or 6 weeks, his kasai may have been more successful. The earlier it is done, the better the outcome. 

Biliary atresia affects 1 in 15,000 children. To me, that number is big enough to require more frequent check ups for newborns. It is a sneaky disease because babies appear fine at birth. It isn’t until around 4-6 weeks that they start to show symptoms, such as pale stools or worsening jaundice. 

Before I left the hospital. no one told me to watch for pale stools or worsening jaundice. It’s hard to tell in newborns because jaundice is very common with them. 

There needs to be more education about BA before parents leave the hospital with their babies. The appointments need to be more frequent. Also, stool cards  should be sent home with parents!  

 I’m determined to make this happen. If this could help even one baby, it would be worth it. 

November 15, 2015

My 26th birthday. 

Eli was inconsolable. Something was wrong. Kosair told me not to bring him in unless he was running a fever. I will use this opportunity to say, stay the hell away from the GI department at Kosair Children’s Hospital and I will leave it at that. 

A week later, Eli was seen at Cincinnati children’s for the first time. That place is amazing. When we met Dr. Bezerra, I felt like 25 pounds had been lifted off of my shoulders. He told us that he would admit Eli and would straighten him out. He was malnourished. He needed to be on a different formula, different medicines and his cholangitis needed to be treated. 

I have no idea how my son made it all of those weeks with cholangitis, but I probably have the man upstairs to thank for that. 

  

After two weeks of antibiotics and steroids, it was determined that Eli’s kasai had failed or never really worked in the first place. They mentioned an NG tube because babies with failed kasai’s can’t gain weight on their own. They also talked about PT/OT making home visits because Eli would be behind developmentally. They also told us to plan on a transplant sooner than later. 

Here we are 8 months later. 

Eli does not have an NG tube and continues to gain weight on his own. He has not had any ascities and developmentally, he is ahead of the game. He is crawling, learning to walk and is so smart. 

Eli is on the transplant list and has a PELD score of 18. I feel confident that he will get a liver when it is the right time. Right now, I want him to continue to gain weight, become stronger and keep being his happy little self. 

We are lucky. Most babies with biliary atresia that have a failed kasai, don’t do this well. 

He’s already beating the odds, I have no doubt that he will make it though his transplant with flying colors 😊 

   

October 2014

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.