I haven't posted since our follow-up visit to Chicago in September because, frankly, some things are hard to accept and talk about. The visit itself went fine, nothing got stolen and no one got hurt. She made it through the CT scan without incident, even got big-girl points for getting her IV without the numbing medicine (which scares her and causes a freak-out). The CT scan showed that her shunt is clotting at one of the connection points. There is also a kink in the shunt. All indications since are that the shunt is narrowing (various blood tests and physical markers like spider veins on her body and spleen enlargment). It is Dr. Superina's impression that the kinking is due to her interval growth (which was a lot in a short amount of time) and, for lack of better words, her guts shifted to accomodate her growth and now the shunt is kinked. The clotting is likely the cause of the increased amount of spider veins on her body and for being able to see and feel the veins in her abdomen much more clearly (similar to prior to the shunt surgery).
Reilly is scheduled for a scope procedure this Thursday and we will have a lot better information gained from this procedure. Since we have been back from Chicago, her ammonia levels spiked and she is back on medicine to keep those under control.
There is a very good liklihood that Reilly will need what is called "interventional radiology therapy" in an attempt to remove the clot from her shunt and possible straighten it out. It involves a procedure where the radiologist goes in through veins in her leg and balloons the shunt and cleans it out. We are not certain at this point whether this will need to be done prior to her follow-up in December or right after the first of the year. The scope will tell us and her doctors more about how critical the issue is and whether it is reasonable to wait until after the first of the year to try this procedure.
If for some reason the balloon procedure does not work, the next step would be to go in and replace the shunt. Yes, all over again.
Right now, we are still getting our heads and our hearts around this situation.
We have had some bright news though, Reilly and Cole have a baby cousin! Isaac David, my brother and sister-in-law's baby, was born October 16. We are all very excited and glad that he is finally here!
I will update soon! Love and thanks to all who keep Reilly and our family in their thoughts and prayers.
