Cincinnati

I apologize for taking so long to update the blog upon returning from our trip to Cincinnati.  I know that many of you have been waiting to find out how things went.  I have been busy processing it all, and discussing what it all means with Paul.   I have to say a huge “thank you” to my Mom, who made it possible for Paul to go with us this time.  It would have been twice as difficult had he not been there listening to the doctors, asking questions, and helping me give all the details of Keyan’s health history.

So, what did they find?  To sum it up, the doctor told us that 99% of kids with chronic GI and metabolic problems have something wrong wither anatomically or structurally.  At this point, they can know with absolute certainty that Keyan does not fit into that 99 %.  Boy is that a surprise!  Her problems are not caused by a structural problem, so that leaves all of the “exotic” disease.  And yes, he used the word “exotic”…not the greatest of terms in my opinion.  So, now they will do their best to figure out what rare disease is causing our precious girl to be in her current health situation.  We will not put her thru a ton of invasive procedures, and the doctor reassured us that doing so would not be necessary, but it could be a long haul.  All in all, I would give just about anything to have a diagnosis, and was discouraged to not get one.  However, I am trying really hard to be positive and be thankful that at least the doctors are not giving up on her.  They are still willing to keep seeking out the answers.  Obviously, our greatest fear is that we won’t figure it our before the next onslaught of infections.  The bottom line is when a child is TPN dependant, with a central line, infections are part of the deal.  Luckily, for right now, we have the infections under control but the reality is that it is just a matter of time before they rear their ugly heads.

The plan for now is to put her food back to 7mls/hr for a couple of weeks to try and reestablish a base line and maybe get her potassium back under control. (For those that don’t know, it has been running low again and we had to make a trip to the ER for a bolus last week.)  After that, we will trial a new medication which if it happened to help, would direct the doctors to some rare disease.  If it doesn’t help, than we move on from there.  We should not have to return to Cincinnati for a couple of months which will be really good on our time and budget. 

So, for now, we keep living this life, fighting fires, trying to keep things balanced, enjoying life outside of the hospital, and just being a family.  Meanwhile, the doctors follow all of the rabbit trails until we can hopefully find the right one.  Dear God…grant us patience, and please, I beg, keep our girl safe.