Back to Where it All Started

I am starting this blog for a couple reasons. First, we are hoping this is a way that everyone can stay informed. We have been absolutely overwhelmed with the love, support and concern everyone has shown through out Addy's life. She is one blessed little girl! Second, this will be a way for us to hopefully remember everything. Pat and I have learned more medical jargon than either of us ever cared to learn but there are still some things the doctors say that we aren't sure about, so it is nice to have it all recorded. Third, we hope that this may help another family going through this someday. When we first found out Addy had to have a transplant, a friend that I went to  high school with send me a link to a blog or someone she knew. While it was a little scary to read, it was also comforting to know what to expect.

For those that don't know all that Addy has gone through, I am going to give you a Cliff Notes version (or what we have to tell the doctors every time we have been admitted). I had a pretty easy pregnancy. I wasn't sick very much and wasn't overly uncomfortable. Delivery was normal and pretty fast (thankfully!). Her Apgar score was normal and her bilirubin was a little high, but nothing to be concerned about. We got to go home after two nights in the hospital. At her one week appointment her bilirubin still was a little elevated, but the doctors didn't feel that she needed the photo-therapy. We were told since she was nursing, she may be jaundiced a little more than a formula fed baby. At seven weeks I took her back to the doctor, concerned about her color. He ordered blood work and we went home. Soon I got a call from Pat that scared me more than I had ever been scared before. He told me the doctor called him and we needed to get to Children's as soon as we could. When we got there we waited in the ER as they decided what needed to be done. Her veins were so small that they had a hard time getting an IV in and had to poke her three times before they finally called someone else, who was able to get it on the first try. It was awful to watch her go through that. Next they wanted an ultrasound of her stomach. They did one but said it wasn't clear enough because she had just eaten. We had to wait until she hadn't eaten for four hours before we could do another one. If you know Addy, you know this wasn't easy. She was furious! Pat and I took turns walking around this tiny room trying to console her. Finally she fell asleep in Pat's arms. When we went to get the ultrasound Addy squirmed all over the table and just screamed, she was so hungry. This of course made the whole process a lot longer, but they finally got what they needed. After that we went back to the ER room and were told shortly after that we were going to be admitted. From the ultrasound and the blood work there was something wrong with her liver but they needed to do more testing.

The biggest concern that the doctors had at the beginning was that Addy had biliary atresia. Pretty much this is a blockage or disconnect from the liver to other organs. To check for this we had to do a hydascan but she had to be on special medicine for five days. They also started her on other medicine, which she is still currently on. She take Ursidiol, to help with the bile caused by the jaundice, AquaADEKS, a multi-vitamin, extra Vitamin D, and extra Vitamin K. They also started her on Pergestimil formula to supplement with nursing. Pat went home after the 4th day to go back to work and on the 5th day we did the hydascan and found it wasn't biliary atresia. However, they didn't know what it was. They allowed us to go home and we scheduled follow up appointments.

A little over a month later at an appointment, the doctors were concerned that she was not gaining any weight. They hospitalized us again so they could monitor her feeding and weight gain. They adjusted her calorie intake with the formula and told me I could no longer nurse. I was absolutely heart broken and had a really hard time with that. Again after 5 days, they were comfortable releasing us and letting us go home.

Another month passed and we were back at the doctor's office. They now wanted to do a liver biopsy because they told us that would be the most sure fire way to diagnose Addy. The doctors also wanted to do it now because, at the time, there was a world class hematologist (blood doctor) on service at the hospital. This was such a big deal because Addy's blood clotting numbers were really high, which means she was more prone to bleeding and he could monitor her to make sure she didn't bleed during or after the procedure. We decided to go ahead with it even though we had put it off because we didn't want her to have surgery if there were other ways to figuring out what was wrong. We were in the hospital 2 days before the actual biospy because the hematologist wanted to give her Vitamin K through an IV before the procedure to help with the bleeding. Finally they did the liver biopsy. She had to be put under so that was unnerving for Pat and I. When she was in the operating room, Pat and I spent our time playing Sonic the Hedgehog on the waiting room's Game Cube. The procedure didn't take longer than 20 minutes and when we went back to see Addy she was smiling. Once the doctors were happy with her levels we were released which was a day or two later.

Two week later we went back to the clinic to find out the results of the biopsy. We met with Dr. Potter who is the liver specialist at Children's in Columbus. She told us that there was scarred tissue in her liver but they didn't know why or what caused it, but it looked like she would need a transplant. I was shocked and didn't know what to say or do. Thankfully my dad had gone to the appointment with me because Pat had to work. After the initial shock wore off we realized that whatever we needed to do to get Addy healthy was what we were going to do.

To start the transplant process we were sent to Children's Hospital in Pittsburgh. The screening process was a three day long process where we met with a variety of doctors and other specialists. The worst of these was an education session where we were told all that Addy would go through if she had the transplant. It was terrifying. Looking back it is nice to know everything, but at the time we were both completely against doing the transplant. We didn't stay in the hospital for the screening process so we were able to explore Pittsburgh a little. While the traffic makes no sense, we found plenty to take up our time. Once we were done, we were told the whole team would meet on Friday and we may know something right after that or with it being right before the holidays it may not be till after the New Year.

We didn't have to wait long because they called us that Friday. Dr. Schnieder, the hepatologist at Pittsburgh, called while I was at our school Christmas Dinner. He told me that she was a candidate for transplant and that we should consider putting her on the UNOS (United Network for Organ Sharing) list. We would have her blood drawn periodically and that would determine her PELD (Pediatric End Stage Liver Disease) score.

This was all very overwhelming but like I have said, if it wasn't for the amazing support from our family, friends, co-workers and everyone else we would never have been able to make it through.