Well- this week has brought a new year and some news that is not what we wanted but in the end is obviously what God has planned for Harrison.
After Harrison's second surgery, Doctors felt pretty sure Harrison had biliary atresia. It was found that he had no gall bladder and his liver looked like it had the beginning stages of scarring. But a liver biopsy would confirm. So on New Year's Day, the liver biopsy results came in and confirmed what I already knew and most of us already expected, but definitely not what we wanted..biliary atresia. Harrison is now scheduled for a procedure called the KASAI procedure where doctors will attempt to create a way for bile to flow. This procedure is not a cure nor is it guaranteed to work it really just buys Harrison time before a liver transplant has to take place. If you know anything about liver transplants, they are one of the most expensive medical procedures done in medical science and outcomes and prognosis are not superb, but we will take one day at time. Harrison is currently trying to recover from his last surgery and things are looking better, but they are having to start very strong antibiotics because blood results show a possible infection. We should know more about this in two days.
With all this being said, you might wonder why I can even utter the words "Happy New Year." And so my response is: It is only by God's grace. But I would like to share with you what he has revealed to me in all of this:
1. Every day that Harrison is here is a blessing, and it is ordained by God. There is a reason and purpose and I try to find it.
2. Every day that Harrison is here is one more day that more knowledge is gained about Cat Eye Syndrome, biliary atresia, and liver disease all of which are new and highly researched fields that are needed to save lives.
3. Every day that Harrison is here another doctor, nurse, family member, or friend, learns of his rare situation and can grow from it.
Ex: Today Harrison had a new nurse Andrea. She said she fell in love with him as soon as she saw him. I could tell by the questions she asked me and the tone of voice she used she really understood the seriousness of Harrison's condition but wasn't sure how I was taking it all in. By the end of the night, she finally stated she couldn't believe how well I was doing, but was concerned I was trying to hold it all in. I told her I was at the point of taking every day for what it was and that I was definitely aware of how serious this all was, but it was not in my control. She told me she was there for me and that is exactly what I should do is love Harrison right now and today and cherish it. She was so sweet and she hugged me and said she immediately felt connected to Harrison and that she was there for both of us to cry and cheer on. She is another angel sent by God to help me another day.
4. Throughout this whole process I have felt the need to research out and hunt for as much information as I can on Harrison's condition, symptoms, anomalies, etc. I did all of this because I had to know what could be done to "fix" it but I also had to know what I might be facing before it was said. If I saw it couldn't be fixed, then I panicked and then I would relinquish my fear to God and come to terms with what lies ahead. But I have also been faced with the most serious of all anomalies,biliary atresia. What Harrison has isn't curable, and no research will ever tell me how long my son will live or what the outcome of any this will be. For the first time in my life, I can't run from this news nor can I push it away. I can't control the outcomes, but I also can't let what I know swallow the joy that Harrison brings to me today. This has been a HUGE step for me.
5. I have also seen how much family, friends, and prayers are exactly what I needed. I have loved being surrounded by prayers and family members. It seems strange, but being in a crowd of people I know care and love my family has been very uplifting and help me see that I can do this, no matter what. So if I have sat in your living room or at your dinner table for Christmas this year, or you have sat in the NICU waiting room scrubbing for 2 minutes followed by the donning of the infamous yellow thermal suit, know I am thankful for those moments where your back rubs, hugs, tears, prayers, food, jokes, and laughter helped me see the light at the end of the tunnel.
6. I have also seen that some of the people that God has placed in my life such as those who also have children with special needs we now share a common bond that I never realized would connect us. I now understand so many of things I did not before, and I believe there is a reason we met. I am thankful for their support and understanding.
7. God placed me at a hospital that is fairly close to home, it is the top hospital for liver disease in the Carolina's, it is the largest hospital that does pediatric liver transplants in the Carolina's, because of this the surgeons have operated on biliary atresia more than Duke, Wake, and other big name hospitals in the region. He has placed a surgeon in the care of Harrison who says that he treats every patient as if it was his child he was operating on. He is thorough, wonderful, and hopefully optimistic. And this hospital has only been in place for 2 years..amazing.
So this New Year will be great because God is in control and not me. My New Year Resolution is live life for today for God has blessed me with it. I promise to not dwell on what the future may hold, because I want to enjoy the glory that God has brought today.
Please continue to pray for Harrison and our family. Praise God for what he has given us today.