A Drinking Problem

Over the past 18 months, God has BLESSED Caed with great health!  We have not dealt with any major issues (only normal SBS ones).  I sit back some days and find myself just staring at him.  In absolute awe!  Not in Caed.  But in God's undeserving mercy.  In His Healing Power.  It's REAL!!!  And we have not forgotten just how far He has brought us....

This past weekend we were at my parents' house.  The kids were playing the Wii in the living room.  A place in which Caed spent many months on the couch (prior to going to Nebraska in 2008).  I had a flash back moment.  I could see him.  Age 5.  Puffy yellow cheeks.  Hooked to machines.  Sad.  Frail.  The same room.  The same child.  Only differences were new carpet, fresh paint,....and the MIRACLE that transformed my son.

There are no words for that.  To have lived it.  To have been in such a deep dark pit for so long.  To now seeing those everyday "normal" moments that we all experience (and take for granted) in our children.

However, the last 3 months we have been reminded that Caed does indeed have a chronic lifelong condition.  It's easy somedays to forget.  To get wrapped up in the hustle and bustle of life.  But, over Thanksgiving we began seeing some things in Caed that we couldn't put our finger on.  Nevertheless we knew "something" wasn't right.  It was in my gut.  I knew we were seeing moments in him that just weren't Caed.  They were not the usual issues.  They were not intestinal.  There was no pain involved.  It was psychological/neurological.  I'm NO doctor (although I'd give most nurses a run for her money now), but I knew it was something going on in his brain.  His actions and behaviors were so out of character for Caed.  Things got so bad, even Reagan began asking us "what is wrong with him?"

Finally, I talked with Nebraska.  We had no idea if this new "issue" was even short gut related, but I just couldn't sit back and continue to watch my fun-loving son....disappear.  We got our answer.  They said it sounded like he was suffering from intermittent bouts of D-lactic acidosis.   A condition (common with short gut patients) in which they lose sodium bicarb in their stool so much that it drops their levels to a point they become acidotic.  Symptoms include - extreme irritability, loss of focus, lethargic, etc...  Translation: NOT FUN TO BE AROUND!  For me, it was more than that.  To know something was going on (psychologically) that he had no control over.  To see him "lose his mind" was awful.  It broke my heart.  (as well as once again test my unconditional love and patience)  During those episodes, I felt bitterness inching its way into my heart again.  Will there always be some sort of battle he has to face?  I KNOW we are blessed!  I know Caed is an exception to so many SBS kids.  He truly is living as normally as any other 10 yr. old boy.  However, it's in these times, we are reminded that even though outwardly that may be the case....inside his little body, he clearly is not normal.

The good news to all this:  it's an EASY FIX!  Caed needs to simply stay hydrated.  (last week's lab results indicated he indeed is on the dry side)  This is nothing new for him.  He has been drinking an oral rehydration salt mixture since 2009.  However, I feel I have really dropped the ball this school year.  Particularly this winter.  Because Caed has been doing SO well, forcing him to drink his drink everyday has gradually over time become less of a priority.  100% unintentional.  Now we see where we failed miserably.  Definitely a lesson learned.  Hydration will always be very important for Caed, regardless how "well" he seems on the outside.

We finally have a diagnosis, as well as a solution. The next step is making a 10 year old boy understand the importance of obeying dr.'s orders.  We hear on a daily basis..."It's not fair!"  We continually have to give him the speech that because of his lack of intestines, his body does not work like everybody else's.  There are things that he will have to do (or not do!) the rest of his life to compensate for it.  Todd tried to explain to him today that not all short gut kids are doing as well as he is.  Some still have a central line and feeding tube, and take daily medications.  What he has to do is EASY!!!
(again...we are dealing with a pre-adolescent.  NOTHING makes sense to them!)  Just in the past week,  with forcing more fluids....we can see a dramatic change in him!  A HUGE DIFFERENCE!  If we let him go too long or he doesn't get enough fluid....watch out.  The HULK emerges.  Everyone RUN for your lives!

This is a very minor prayer request, yet fighting any battle (great or small) can be exhausting.  Please pray Caed can truly see the importance in this....and we can get a better handle on his "drinking problem."  ;)