The Diagnosis #JackiesStory

Before we knew it, we were on our way to Jackie's appointments.  The first stop was in Radiology for a Hida Scan, a test that can diagnose diseases of the liver and bile ducts. She had to get an IV with fluid that would make the liver and bile ducts visible in the image.  

After that, we went to see the GI doctor. At this point we were getting tired and were continuing to hope that this was all about the doctors being cautious. However, those hopes diminished when we visited the GI. As we waited in the exam room, I changed her diaper. Right in the middle of that, the GI walked in and asked to see it. The contents were a pale white. He expressed concern at the coloring and told us he was going to send us to the surgery office immediately. When he returned from contacting Surgery, he briefly explained that the white color in her diaper was a sign that there was no bile leaving her liver. 

I was too confused and shocked to really react to what I was told. At the moment, I was still experiencing the situation, and everything was moving too fast to react right away. I do remember that as we pushed her stroller across the parking lot to the main hospital, I had an epiphany. (I had lost my job at the end of my pregnancy and was questioning my direction in life). It was at that moment when I knew. This was what I was here for. This is what I was put on this earth to do. 

Jackie Pre-Surgery

Once we arrived at the surgeon's office, things seemed to move even faster. Doctor M already had all her information in front of him. He explained that what our baby had was called Biliary Atresia. In my head I wasn't even sure I heard that right. "Billy who," I asked myself.  The doctor explained it in concrete terms for us. He described it as imagining you are trying to get out of your front door and instead of an open door, there is a brick wall. There is no way for you to get out. He explained the bile ducts (the doors in the liver) are blocked (the brick wall) and can't exit the liver.  He explained this leads to scaring and infections. I think he knew we weren't ready to process the fact that it can also lead to liver failure.

He then told us that he wanted to do the Kasai procedure, a surgical procedure to help restore some bile flow in the liver. He told us that it may not be a permanent fix. He had us wait in the waiting room as he scheduled the surgery. He said it worked best when done within the first month of life. Yes, this was all before she was 4 weeks old.

I don't remember much from the blur of that day, but I do remember getting a call from the pediatrician's office while we were still at the surgeon's office. The doctors and the surgeons were telling me that this disease was not my fault or the result of anything I did when pregnant. 

We finally left the surgeon's office. I'm not sure how I was able to sleep that night. I was still processing the last 3 days and nothing seemed "real" at the time. I knew I had to get some rest, though because we had to be ready for the surgery that would be happening in just a few short days ahead. 

Up Next: The Surgery

From the Beginning #JackiesStory

                                         INTRODUCTION

What you know about me is that I am an author and have a daughter who was in need of a liver transplant. You may know of my children's book on the topic titled Angel Donor.  However, there is so much more to our story than that. There were trials, dramas, fear, and a whole bunch of faith. Today,with Jackie's permission, I'd like to begin to share that journey with you. 

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Finally, she was here! December 9,2001 my second daughter was born. I held her in my arms just moments after her arrival. I studied her face as any mom has done in those first few moments. She had fine dark hair and she snuggled right up to me. 

As I looked her over I noticed her coloring. At the time I was completely clueless about liver disease, but I noticed she seemed a little darker to me. I'm 100% Italian and she was a newborn so I chalked it up to her either having a more ethnic look than I had or she just had a little newborn jaundice. Nurses seemed okay with her and didn't show any concerns. Neither did a pediatrician.

Another thing that struck me was her first wet diaper. The liquid was very dark. I remember looking at it and thought it was odd as I never noticed that with my first born. However, I once again dismissed it and figured it was something that will improve with more feedings. 

Speaking of feedings, she often ate very little. Her first weight check (at about 2 weeks old) showed she lost some weight since the hospital. Although it was normal for newborns to lose a little weight, they were concerned since she didn't eat as consistently. Her regular pediatrician was away for a few weeks. In the mean time, she had a few more weight checks with little improvement. 
She also still had that jaundiced color to her, so the doctor suggested placing her in the sunlight to help break it down.  

Determined to help her get rid of the jaundice, I was sure to place her in the sunlight where ever we were in the house. One clear memory of that was when I was baking banana bread. I brought her bassinet in the kitchen as we get a good amount of sunlight there during the day,

The time came for another visit to her pediatrician. She was about 3 1/2 weeks old. Her regular pediatrician was back and looked her over. He also felt her abdomen area and said he could feel her liver. This new information combined with her feeding, jaundice and weight issues  caused him to order lab work. This was the first of many, many, many blood draws in her life. She was so good. However, as anyone can imagine she was pretty mad when she felt the needle. 

A few hours later we got a call from her doctor who said her liver labs were very high. He got in contact with our local children's hospital, set up several appointments and ordered medication. At the time it was such a blur. I remember him telling me to fill the prescription right away because she'd need her liver functioning as best as it could for her  radiology "scan". 

I was a little nervous, but I had no idea what awaited us over the next few days. In the mean time, I tried to remain calm and continued to take care of Jackie as best as I could. 

Up Next: The Diagnosis

The Big Diagnosis

Being diagnosed or having a child diagnosed with a liver disease, as with other diseases, is a traumatic experience. There were many things I learned, as did the main character of my book on Biliary Atresia (Angel Donor) at the onset of my child's liver disease. After battling the emotions that go along with something so scary, I found some things to be helpful. Here are some tips I came up with during our ongoing battle with, liver disease and transplantation:

• Stay Calm - take a deep breath and remember to care for yourself and your child. Remember, you can't help your child if you aren't yourself. He/she needs you.
• Find Support-While it is important to remain clam, finding support for yourself is equally important.Joining a group with others going through similar issues will help empower you and help you learn more. Remember, however, never substitute this information for your doctor's information. The doctor knows your child and his her condition. 
• Don't Forget Date Night-Many times marriages suffer when a close family member is ill. Be sure to keep those dates with your spouse. Single Parent? It is still important to get out. Make plans with friends or siblings and have a good time. Taking time for yourself makes you a better parent to your child.
• Trust Your Doctor- Be sure you follow your doctor's advice. They have seen many things, medically, and they are working with you to help your child. That said, don't be afraid to ask questions if you don't understand something, or speak up when you feel something is wrong. Your input it crucial!
• Write About It- Use a journal or an online journal to record your experiences during this time. Record the ups and downs and how you got through them. Online journals,like Caringbridge also allows you to share updates with families and friends, which is useful for those late night E.R. visits and everyone wants to know what's going on.

Below is an inspirational image I created. Please share it as Olivia and I hope to help as many families as we can.

Tubie Friends for kids on Feeding Tubes

A hard fact of life for a child in need of an organ transplant is that many of them will need a feeding tube at some point during their illness. The illness often causes the children to lose their appetites and they are no longer able to eat or drink enough on their own. Optimum nutrition is important for the children so they can properly cope with their disease and stay hydrated. It's also necessary to keep their nutrition in the best shape prior to transplantation. Receiving an organ is a serious surgery and the children's body needs as much nutrition as possible to be able to handle the surgery and to be able to heal well afterwards.

So what happens when your child can no longer eat or drink enough on their own? This is when most doctors will order a feeding tube. Your doctor will decide which one is best for your child. It is important to work closely with your child's doctor as each child is different and responds to their illnesses differently. 

Once it is decided your child will need a feeding tube, depending on their age, they might find this to be a trying and scary time. As infants they may not understand what is happening to them. As children get older they may feel self conscious. Whatever your child may be going through at the moment, I came across a great website that may take some of the anxiety and stress out of this situation. 

I stumbled across Tubie Friends. This is a great website where they will get a Tubie Friends Surgeon to gather information and help create a stuffed animal with a feeding tube made especially for your child. It is definitely something to look into if you have a child who needs a feeding tube. I always like to find a way to ease the stresses our kids have to deal with. Check them out at http://www.tubiefriends.com/ 

Welcome to Angel Donor 's Blog

When your child had any medical problem, it is hard. But it is even more tough when a serious disease occurs which results in the need of an organ transplant. Many families deal with this situation - more than I care to admit, including my own family. My daughter needed 2 liver transplants and my son is a kidney patient who may need a new kidney in the future. Which is why, in part, I wrote the picture book Angel Donor and created this blog. The goal is to of course raise awareness of organ donation, but also to provide support and validation to others going through the same things. May this blog and book be helpful to you. Feel free to leave comments about the book. I would love to share them with my readers to help let them know what the book is about and what other readers thought of it.