Saturday, March 15, 2014

My belly hurts!

Kamryn has been feeling under the weather.  She got the cold that has been circling the house hold.  With a stuffed nose, coughing and little to no sleep she has been on edge.  On edge for her means, "hold you mommy". 

On Monday Mark saw the Doctor for ear pain.  She just had a cold then.  By Tuesday she was complaining, "Mommy my rib hurts."  With a 100+ degree temp, pain in both her ears and her side, I decided to make have her seen by the Dr.

In his office, she filled her pants.  When I changed her I noticed blood in her stool.  This wasn't blood from a large bowel movement, this was blood from her intestinal tract.  Something was wrong.  Labs were drawn, stool delivered and we waited. 

Finally, we had and answer.  C Difficile toxin.  By this time, Wednesday, Kamryn is feeling better. The question is do we treat a child that feels better?  C Difficile is a bacteria in your intestines.  Its there with all the other bacteria.  When the good bacteria is wiped out, say with an antibiotic, this bacteria can take over.  In the average human not a big deal, it's rarely even treated. 

Kamryn is not your average human being. Immune suppression means she doesn't fight things like the average person.  Most parents can take their child to the Doctor get a diagnosis, a plan, medication and be done.  Kamryn can't.  I'm required (gladly) to share everything with the transplant team.  Nothing is done for her without their approval.  Certain medications make her anti-rejection drugs ineffective.  So the question was, do we treat an child who feels better?  That question was posed to an Infectious Disease Doctor.

Thursday night the question became inert.  She once again became symptomatic.  Complaining, "my belly hurts".  By morning she has double ear infection, blood instead of stool, and a cough that would break your heart.   I was on the phone with her doctor and she was being seen as a work-in, with the idea that she may need to be hospitalized.

As we waited in the Doctors office I called Cardiology.  The nurse and I discussed Kamryn. Is she drinking , is she peeing, how is her over all well being?  My opinion was she wasn't sick enough to put into the hospital.  I was to have her Doctor call the Cardiology Doctor and discuss her care. 

I am pleased to say Kamryn is at home.  She wasn't admitted to the hospital, and is being treated with a medication that wipes out this bacteria, and possibly her anti-rejection medication.  She'll have to have more blood work next week to check levels. 

I feel very blessed that Kamryn is able to be treated at home.  Blessed too, that I can weigh in on her care and be heard. 

She hasn't said her belly hurts today.  That's a good thing.