Update

Tomorrow, Reilly will be 5 weeks post surgery.  She continues to do remarkably well.  On Friday, she saw Dr. Noel for her first post-surgery visit.  He indicated that, while she looks and seems fantastic, there are some things that we must be concerned about.  She needs to gain some weight - her post surgery weight was the same as her weight prior to surgery, but her current weight is lower than the last time she saw Dr. Noel.  If she doesn't gain weight by her next appointment (5 weeks), she will be placed on a high protein diet. 

Because of the changes to her circulation as a result of the shunt, her body has to acclimate and adjust to the "new" way things function.  As a result, her heart rate is consistently elevated at this time and some of her blood vessels and veins are, and will be, at times very pronounced (almost looks as if they are bulging out of her skin).

There is a concern about how long she has been taking Prevacid and the risk of osteoporosis, the long term use of the Prevacid and the history of liver disease make Reilly very susceptible.  At her next visit, Dr. Noel will begin weening her off of that medication in an effort to reduce her vulnerability.

We also must be very careful about any kind of virus or bacteria in her system, as the "extra" toxins and foreign cells in her body have the potential to cause the shunt to have clumps of cells deposited in it, which, in turn, will make the shunt more likely to clot off.  There is, for the time being, no waiting out a runny-nose or waiting to see if a "bug" or virus will pass. 

All of this sounds very overwhelming at first, as my emotions have gone from one extreme to the other.  None of this information is a surprise, nor unexpected.  It does sound more ominous coming from the doctor, at least more than I anticipated and I think that surprised me more than the actual information.  All of the immediate concerns, and long-term concerns, are things that we (Rickie and I) knew about before  deciding to go forward with the surgery.  The benefits of the surgery FAR outweigh the alternative option of doing nothing.  So, we will do what we must in order to maintain Reilly's health and well-being, under the advisement of and in conjunction with her physicians, and more importantly with the grace of God, in the hope that she will live a very long, high quality and relatively normal life.  My constant prayer is that the good Lord leads me and shows me the steps to take to help my daughter and keep her safe and make the correct decisions.  I also pray that I do not neglect or over look the needs of Cole, and that I keep him safe and healthy as he is deeply affected / effected by this situation as well.