Saturday, December 26, 2009
Week 3- Trying to find the faith of Job
Oh God! I come to you in desperation, heart aching, for my son Harrison. I pray that if it be your will that his precious life be spared of the diagnosis in which the doctors are saying. Lord I am crumbling, falling apart, and dying on the inside. I need the strength to carry on, and I need the faith and energy that only you can provide. I praise you for the beautiful child that he his, and I know that he is yours and that you have given him to us to love and raise in your likeness. But God, I want him to grow and be healthy..if it is your will please bless him with this opportunity. Let his little body be a testament of your power..In your name I pray..
Week 3 has brought the tidal wave of all decades. The week we were told we would be bringing him home is the same week we learned he may be fighting for his life.
Liver- After feeding for several days, doctors noted that Harrison's stools were not the consistency or color they should be. His lab results showed elevated bilirubin and liver enzymes. A ultrasound of his liver was done and on Christmas Eve we were informed that further testing will be needed to rule out biliary atresia. Biliary atresia is not curable and is a liver disease. It requires a surgery pretty quickly in an infant's life and the surgery only works in about 50-80% of patients. If it is successful, at some point a liver transplant will be needed. 50% of infants who have had this surgery have had a liver transplant by the age of 2. Then you deal with the prognosis of a liver transplant. In Harrison's case, his prognosis with the initial procedure is considered not great due to the fact he has other anomalies such as the heart defect and polysplenia. He will be undergoing a HIDA scan to be followed by liver biopsy and an interoperative procedure to diagnose or rule out Biliary Atresia. He also has what appears to be 2 cysts on the biliary tree. These can be choledochal cysts or something else but choledochal cysts can occur with biliary atresia. In addition, another test has to be performed to look at malrotation of the gut which can also occur in these cases. Please pray that test results will reveal exactly what the doctors need to see.
As for the other areas, it all seems so minor at this point. Nothing has really changed other than he will be at full feeds at noon today. Praise God! Please pray that he will get bigger and stronger.
Prayer- Pray that God's will be done but also pray for a miracle. Pray for strength for Jamie and I as we face the road ahead. Pray for Emily as she tries to understand it all. Pray for wisdom and knowledge of all the doctors involved.
Praise- For love and support of family and friends. It is a reminder that we will make it and get through it.
This is the hardest thing I have ever had to write. My mind is in turmoil, my heart is in pieces, and my stomach is in knots. Christmas has been a blur, and happiness seems a million miles away. Yet I feel selfish to wish for anything better for myself while my child's body struggles to maintain life itself. Love is powerful and I am searching for healing powers of God's love as I give all that is in me to my family and son.