Haven’s new doctors have been busy implementing their plans to discover what lies behind her issues.  They have also been very kind enough to spend some time with us discussing the ideas behind everything they are doing.  Turns out that apart from her heart there is quite a bit of concern about her kidneys, her thyroid, her muscular system, and her liver.  It’s not quite clear at this point whether or not the problems are related, come from the same source, or are isolated occurrences.  

The doctors’ current plan of action is two-fold:  firstly, specialists in each of those areas areare attempting to alleviate the current problems Haven is experiencing; secondly, they are attempting to identify what kind of condition she has that may be behind all of this.  They feel that progress is slowly being made in both of those areas.  We know Haven’s case has always been very complex, but now some things are coming out of the woodwork to show indeed just how complicated her condition really is.

We have not received any new results from the genetic studies that have been taken so far.  The doctors following her thyroid problems have prescribed that she receive a hormone supplement to make up for any lack of that hormone due to her thyroid not functioning properly.  We just started that last night.  The kidney doctors have increased her medications that should help her move more fluid out of her system.  The metobolism/genetics doctor has been making many adjustments to her feeding regiment which Haven seems to be tolerating well.  As of this afternoon, she is receiving nearly twice the amount of feedings she has ever received (though we realize that 10 mililiters per hour is still a VERY small amount of food).  She is on a special formula (different from her previous special formulas which she never tolerated) that is diluted with Pedialyte.  His goal is for her to be receiving 20 mililiters per hour very soon.  Of course, we are constantly attempting to wean down the ventilator support, but progress can not be made in that area with as much fluid as she has on board compounded with her weak muscles.  The sooner we can get the fluid moving, the sooner we can start moving down on the ventilator support again. 

We obviously are excited to hopefully be getting all of these current organ problems taken care of, but we are also anxious to find out what the source of all of this could be or what genetic condition she actually has.  They forwarned us that the process of diagnosing these types of disorders is a long process and much patience must be exercised.  We will keep you updated throughout the process.