Follow Up Visits

Hematology and GI Follow Ups April 5, 2011

Today is the day we find out the bone marrow biopsy results and schedule Rylee's next EDG with Dr. Noel. It was a very hectic day that was suppose to start with our first appointment at 11:45 but turned into our first appointment at 2:15....yes.......TORCHER for the nerves! Hematologist, Dr. Morales, said that her bone marrow biopsy was fine. He will monitor her platelets and he may want to look in to immune issues later, but we need to get through the GI issues first. He said that this was a big puzzle...but the more pieces we put together...the more it made sense and each piece fit. The blood clot is from her tube/cord in NICU after her stroke. It is an unfortunate side effect. Her spleen enlarged from this because the blood is backing up in there from her liver and the damage the clot caused in her portal vein. The esophagal varices are also putting pressure on her spleen and anything viral that she has had is adding to enlargement as well. Her low platelets are due not only to the clot damage but the spleen is what holds platelets and her spleen is so big that it is swallowing her platelets. WOW!!! GI doctors scheduled her next EDG scope for Wednesday, April 13, 2011 at 12:30 p.m. We will be admitted to Dr. Morales (Hematologist) floor for the platelet transfusions and blood labs. They will band more varices if need be and then we will have to do again. They are going to have more surgeons come and talk to us about the Rex Shunt surgery they want to perform on her during the summer. Danny and I are researching, as is my uncle her pediatrician. We are very comfortable with her GI team at Children's. They want to get Rylee back to her normal, active, spunky self and they were very disappointed that she hadn't returned to school before today!!! :)

I have attached a picture so that maybe it will give a better mental picture of what we are looking at. The dark lines represent the damage to her portal vein. They want to take a vein from her neck and bypass from there to liver. This is the Rex Shunt surgery.

So off to talk to teachers/administration we will go!!! So basically the one "thing" that was placed in my child to save her is the one "thing" that has come back to harm her! Ironic how life works isn't it......