…still at Children’s. Hannah is doing so much better though. I didn’t realize how sick she looked before. She is looking so much healthier after the new shunt valve. She is more animated and has more color to her and looks less swollen. It seems we have finally figured out how to manage her hydrocephalus. I feel she has finally been able to start really healing from all the surgeries. 

But we are still at Children’s. After the valve was replaced the neurosurgery team chose to keep the EVD in place in case of another shunt malfunction and also to be able to take cerebrospinal fluid (CSF) samples to check for infection. The first few days of samples grew no bacteria. But then one of them did. Hannah had no fevers or clinical signs of infection so we kept taking more samples in case the sample was contaminated. A few more days of no bacteria growth and then another positive sample of a different type of bacteria.

The situation has been confusing so infectious disease has been called in. They are fairly certain both samples were contaminated because it just does not make sense.  But to be safe Hannah went into the OR for the seventh time Friday evening. There the surgeons removed the EVD and tapped her shunt for one final CSF sample and the vascular access team placed a PICC line for intravenous antibiotic administration over the next several days.

If no more bacteria grows from the last couple samples over the next day or two, we should be able to stop the antibiotics and transfer to Gillette to finally start rehab again!  Hannah is so incredibly restless at the hospital.  She doesn’t want to lie in bed anymore so we are going on several stroller rides around the hospital every day. The staff have gotten used to seeing us all over the hospital. She is ready to get out of here (and we are too)!