Thursday, February 16, 2012

Return of TPN

I hope y'all can forgive me for taking a week off from updating.  This c.diff infection is wearing all of us out, especially Keegan.  He finally started to get glimpses of his old energy and happiness back yesterday, but it comes in waves.  We have been chasing his electrolyte levels like crazy with oral and IV supplementation.  He wants to eat, but it just goes right through him.  It will likely take a long time for the c.diff to correct itself.  (Quick education: clostridium difficile is a bacteria often found in hospitals that has a minor effect on healthy people but can overpopulate in the intestines after antibiotics have cleared out the "good" bacteria.)

Since we know Keegan is going from really bad diarrhea to his baseline diarrhea, his GI doctor and dietician felt that we should go ahead with using TPN three nights per week to maintain his electrolyte levels.  What we know now is that Keegan's intestinal problems are the effect of immune dysfunction.  His GI system is the first target of an over-production of antibodies (what we originally thought last summer was autoimmune enteropathy but now know to be part of a bigger picture of a systemic immune dysfunction that looks a heck of a whole lot like HLH).  As we wean the steroids as part of Keegan's immunosuppressive regimen, we will see his GI problems continue to worsen.  If he eats food and enjoys mealtimes with the rest of the family, he will have diarrhea.  If he is fed elemental formula through his g-tube, he will have diarrhea.  His GI doctors both here and in Boston were of the opinion that if eating makes him happy despite the tummy problems, let him!  We might as well support him now with TPN for electrolytes and adjust over time for calorie maintenance.  That is pretty hard to argue with.

Still, this was a torn decision for Gray and me.  In the grand scheme of things, it's minor.  We know he will feel better and be able to fight better when he is properly supported with nutrition.  Adding it back in now, however, is recognition that TPN will be a long-term part of our lives.  And that is a major add-on that is pretty difficult to accept.  Additionally, we have seen how miserable the extra fluid retention from steroid use has made him and how it raised his blood pressure even higher.  It's a delicate line to walk.

No matter how we feel about it, tonight the TPN returns.  It has been four and a half months of freedom from pumps.  We will run it for 10 hours three nights per week.  No pumps to drag around during the day.  No constant drips of formula through a g-tube pump that makes him lose interest in food.  Keegan's port is accessed all week anyway for twice a day IV infusions of anakinra, so the line is there to be used.  

This is a pretty big step in our long-term battle for Keegan's health.  We are surrendering a big piece of ground with this.  It makes me feel like this is just the beginning of the end of good or stable times for him.  And that breaks my heart.  Even if it is the right thing to do.

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