back to square one

I feel like with Malachi we are always starting over. Last night before I left the hospital, I made sure to point out to one of the NPs that his lymph nodes seemed larger to me, his rash didn't seem any better, and that he was getting a really bad rash on his bum. I wanted the staff to be aware that these were still valid concerns and that John and I wanted some answers as to what is going on with our baby boy.

That being said, this afternoon I received a call from IR (interventional radiology) asking for consent to place another PICC line. For those wondering, PICC lines are for "long-term" access. This will be Malachi's THIRD line in the past two weeks. It just breaks my heart. Because of his BT shunt, he cannot have access in his left arm. His veins are not good enough for a PICC line in his other arm now that he's already had two, those arteries are clotted off and no longer PICC-worthy.

So, today, Malachi's white count is still very very high--37,000. Normal high is like 12,000. He doesn't have a fever, which is good, but still no one knows what's going on. Infectious disease has been contacted and they are running some labs to check for fungal type issues going on that didn't show up in his blood cultures from last week and their desire is to go ahead with the lymph node biopsy as they are now getting larger. Also, his rash seems no better than when he was readmitted two weeks ago.

Praying for answers. We want our baby home, but we want to know that he's healthy enough to be at home. Will probably update either late tonight when I get home or early tomorrow after I've had a chance to sleep. Poor little man.