Round II

Back again for round 2 to beat the abcessus bug.  Sage and I admitted back to UNC yesterday and immediately started back on his amikacin, one of 3 antibiotics to fight the abcessus.  Home sweet home, back in UNC Children's 5C16.  Our Spiderman painting was still here to greet us when we arrived.

Today was really tough for Sage.  In order to go to the OR to place his picc and get a bronchoscopy, he had to be npo (no food or water) after midnight.  Those horrible dufases didn't come to get him for his procedure until 4pm!!  The good mommy I am, I have to file a complaint with the procedural supervisor.  He is 6, and that was torture.  Yet, he still all smiles :-)  Super Sage!  All the nurses adore him because of his go with the flow attitude and always goofin off personality, regardless of his situation.  Count on Sage for Smiles.  Always.

Finally in the Or procedure room, a familiar face and one of the beloved residents did his bronchoscopy.  He did find mucus strands in the lower right and upper left lung lobes, which is a beginning sign of infection.  He got a great culture from an extensive lavage (saline wash out of the lungs) and Sage is now a part of another study about anaerobic bacteria in pediatric CF cases.

waiting is the worst.

After the bronch., the picc teams came in and as always, had a very hard time placing his central line.  Realistically as parents,  we need to consider the possabilities for giving Sage a port, in place of a picc line, for our next hospital admission.  This is a hard pill to swallow for CF parents because its a milestone in the progression of this dreaded disease in such a little dude.  During the trauma of placing the picc, Sage lost a lot of blood.  Dread for a mommy.  Sage thought it was cool.  It's in, and looks great...much better than last time, so hopefully it won't pull out with every dressing change like the last one before Christmas.

ComeOn!! wakin up mad that his food wasn't here yet!!  Mom got him fries :-)

The plan:  Keep on the IV amikacin.  Restart the clarithromyacin (oral antibiotic) Thurs or Friday.  Get an allergy and dermatology consult.  Hold my breath until the results of his bronch come back.  If he is AFB (abcessus) is negative, then we can go home on the current meds for IV's that last 3 more weeks.  If he is still positive for abcessus....well....all bets are off and we will stay in the hospital for quite a long time.  I'm not even mentally going down that road just yet....


Plan for tomorrow:  less blood,
        more food and fun.
Simple enough :-)
Love, Mommy