We Are Facing Some Decisions

As of right now, endocrinology is working on getting us the IGF-1 injections.  We found out they are 2x a day injections, must be refrigerated, and have to be administered either 20 minutes before or after a meal.  We actually just got a letter from our pharmaceutical insurance stating that they received notification that we were to start getting the injections, but are waiting on some more verifications. 

However, we aren't sure we are going to go that route.  We had a very big appointment with GI today, and it looks like we are facing some big decisions.  GI's main concern with not "fixing" Macy's liver is the long-term effect it can have on her cognitively, and not so much worried about growth.  When your blood is not getting "cleaned" by traveling through your liver, it can cause your ammonia levels to rise, and cause some cognitive problems.  Ammonia levels should normally be less than 35.  Macy lives in the 90s and 100s.  This is very high, and not safe long-term.  So, Dr. Molleston feels it is time to intervene.  This is something I had a feeling was coming considering the long-term effects it can have for her brain, her lungs, and her growth.  It's just very hard to hear and think about. 

Dr. Marshalleck, is our Interventional Radiologist at Riley who performed a venogram on Macy in 2008.  Dr. Molleston, our GI said we could have him perform another follow-up venogram.  He would additionally do a ballooning, while in there,  to see if we could close the shunt and other veins in her liver would be able to receive the blood flow so that it would go into her liver properly.  It is a tricky procedure that measures pressures and has quite a bit to look at.  If it appears that her shunt can be closed, then we would most likely travel to Dr. Superina in Chicago (one of the only doctors that currently performs these repairs) to have him close her shunting in a 2-3 step banding procedure. 

So as of right now, Dr. Molleston has a call in to Dr. Superina to get his professional opinion about Macy's case.  She also had communications open between a few of our other specialists to touch base, and also get their opinions.  So if we go the "fix" route, and it works, Macy will not need the IGF-1 injections.   I don't know of the plan right now, if the "fix" turns out not to be an option.  I am not going to think about that....we are thinking positively! 

This was so much for Jeremy and me to take in this morning.  I kind of feel like I was in a fog the rest of the day.  It helped to talk with my mom and a friend at work today.  It helps me think things over when I blog as well.  Nevertheless, Jeremy and I have some big decisions to make.  Do we want the procedure for Macy?  Do we want to do part of it at Riley and part in Chicago?  Do we want to do it all in Chicago?  We also have lots of questions.  What are the main risks of the procedure?  Is it reversible if problems arise down the road?  Do we have to have a follow-up revision years down the road?  Is she cured?  I'm not going to lie, I'm worried.  I am worried that we may make the wrong decision.  I am worried that we may mess with something and cause more problems.  I worried what might happen if we do not "fix" this.  I am worried mostly about Macy....how will this affect her?  We will keep posting as more information comes.  Thanks for following our family blog and for all the prayers!