An Anniversary, Of Sorts

Tomorrow will be three years since we saw the pediatric gastroenterologist for the first time. We were so confident that Anthony was going to be seen by this doctor, and that this doctor would have some quick answer for us. All I remember is seeing Dr. Udall's face when he walked into the exam room. I knew immediately that there would be no quick fix. I knew then that Anthony was VERY sick.

After the exam, Dr. Udall sent us for more blood work and an ultrasound (to look for Anthony's gallbladder, which HAD been there a month prior). After all of that, we were to go home and wait to hear from him the next day. Two hours later, on his way home, Dr. Udall called me and suggested that I call Mark to come home early so that we could have a phone conference. Not only did I call Mark, I called my parents and Mark's parents. This was the first of many phone conversations with Dr. Udall over the next two days. We found out that Anthony's liver enzymes were more than five times normal, and that his direct ("bad") bilirubin was 11.0 (normal is 0-1). Dr. Udall said that he couldn't confirm what the next step should be, but that he would like to do a biopsy. He would call again the next day to schedule that, after he had a meeting with the transplant team at Children's Hospital of New Orleans.

The next day, Dr. Udall called. He had the results of the ultrasound, and had been to the team meeting. Anthony would not go to Children's for a biopsy. He was being referred immediately to Omaha, Nebraska for a liver transplant. The ultrasound showed no evidence of a gall bladder, meaning Anthony's liver had no way of excreting the bile. This would cause rapid and painful death to his liver.

This is the email that I sent out to family and friends, and I have no idea how I didn't fall apart writing this. Of course, I didn't understand that the lack of gall bladder meant that bile wasn't flowing. I didn't know that this was going to be a painful experience for Anthony. Every doctor we had talked to obviously was smart enough to keep those tid-bits of information away from a hormonally overloaded new mom.

Dear Family and Friends,

Two days ago, I told you that Anthony needed a liver biopsy so that the doctors could give us a diagnosis. However, after consulting with a few colleagues, Dr. Udall (the gastro) called yesterday and told us that a biopsy would do no good, and that we needed to get moving on getting Anthony a new liver. At this time, it looks like we will depart for Nebraska Monday morning. Anthony will be under the care of the doctors and liver transplant team at University of Nebraska at Omaha. We have been assured by all of our doctors that this is the best place for Anthony to receive his transplant.

We’re not sure if the team will be able to do a “living related” transplant because Anthony is so small. If an LR transplant cannot be done, we will be placed on a waiting list for an infant cadaver donor. Because Anthony’s condition is listed as life critical, we will be placed very high on the waiting list, and are assured that we won’t have to wait long. I hate to think that some other mother will lose her child, and pray for her to be strong in knowing that her child gave life to other children.

In the meantime, Mark will take Anthony today to have some more blood work done. He received a Vitamin K shot yesterday, and his blood clotting time should go down as a result of that shot. That is one of the criteria for Anthony to be ready for surgery. After the results come back from the blood work, the doctors will make the decision on whether to hospitalize Anthony here at Our Lady of the Lake or in New Orleans at Children’s. They may decide to do neither and let us spend one last weekend home together.

I’ll be with Anthony the entire time he is in Nebraska, and Mark will come back and forth as needed. We both feel that it is important for him to continue going to school and working. It’s going to be very hard for him to be separated from us; please pray for God to give him strength.

Hopefully, I’ll have access to the Internet while in Nebraska, so keep sending emails!

We love you all, and appreciate everything you have all done for us. Keep the prayers coming!

Love, Laurie, Mark and Anthony

Tomorrow we will go to Mass and thank God for the six men who saved my beautiful son's life: pediatrician, pediatric surgeon, gastroenterologist, hepatologist, pediatric transplant surgeon, and MOST IMPORTANTLY: my husband, the father to our miracle.