From the beginning...

February 28, 2011 - our lives changed forever.  My husband was at home with our son and daughter while I was at school that evening.  Reilly was sleeping in the chair, woke up a little grouchy and asking for Mommy.  Rickie told her Mommy would be home in a little bit and she threw up blood.  A LOT of blood.  We found out later that she lost almost half of her blood volume that night.  Rickie immediately raced to the emergency room.  I called to tell him I was on my way home from school and he instructed me to meet him in the ER.  I got there soon after.  The doctors examined Reilly, started IV fluids and took abdominal and chest x-rays. 

 We tried to make the ambulance ride to Children's Hospital in New Orleans an adventure, but she was so weak that she hardly remembers the event at all.  At Children's, we were admitted to PICU and the doctors immediately started working to stabilize her condition.  Sometime on March 1, after several blood tests, she received two blood transfusions.  An EGD (endoscopy) was needed to determine the source of the GI bleeding.  During the EGD, the doctors found that she had grade 4 esophageal varices.  This condition is normally found in individuals who are in their 60s and who are alcoholics or have liver disease of some sort, not perfectly healthy 3yr old little girls.  The doctor made the decision to band some of the varices (6 of them) and keep her in PICU for further observation and testing.  Now that we knew the source of the bleeding, we had to find out the cause of the varices.  Her liver was normal and functioning properly, her liver enzymes were normal, her tissue fine.  A CT scan and ultrasound showed that she has a blockage/clot in her portal vein.  This will require a shunt/bypass surgery to correct.

The problem is that Reilly is so small and her esophagus must be better before the tests (MRA) and surgery can be performed.  The physicians would prefer her to be bigger, to reduce the risk of complications, before the surgery.  Also, doctors who perform the type of surgery required, on children, are located in Chicago.

On March 9, Reilly had another EGD and 5 more esophageal varices were banded.  The varices in her stomach (gastric varices) were much more pronounced and apparently forming quickly.  The doctors decided to allow us to go home on March 10, with instructions to return immediately upon any dark stool, trouble breathing, throwing up, heart palpitations, increased fatigue, etc.  We also have to blood work on Wednesday and third EGD / banding is scheduled for March 23.

Right now, we are holding our breath and hoping for the best and no incidents until we go back on the 23rd.   Any and all thoughts and prayers are welcome!

Please note:  Reilly was a preemie, she was born at 27 weeks as a result of a placental abruption.  She spent 68 days in NICU, with very few issues.  She did have an umbilical catheter which the doctors have indicated is the cause of the clot.

For better information please see the following:
http://www.childrensmemorial.org/depts/siragusa/transplant-surgery/what-is-portal-hypertension.aspx
http://emedicine.medscape.com/article/373009-overview