And the hits just keep on coming...
We're on high alert here. It has been another long and difficult day, but we are finally beginning to get some answers. We have done multiple blood cultures, urine cultures, stool cultures. She has been on antibiotics for more than 24 hours. But the fevers have not eased; every 4 hours, as the Tylenol wears off, the fever reappears, anywhere from 99-102.1 today. We stopped feeding her, and she refuses to eat. She is getting I fluids to keep her hydrated.
More troubling has been her behavior. She has been awake and quiet for more than 12 hours. She just won't sleep. She got Benadryl and Ativan for nausea, and still didn't sleep (Ativan usually knocks her out within 20 minutes). She has just been looking around and laying still all day. She definitely looks sick and weak, and has gone down hill since yesterday.
After waiting all day for some positive change, I realized her fontanel was full, and the veins on her head were very prominent. I had them call for someone who knew her head situation more specifically; since her head is different than any other baby head, the few professionals that see her regularly are the only reliable sources of information about what is "normal" for her.
When the chemo nurse practitioner came in, she agreed immediately that something was not right inside her head. They ordered a STAT CT scan to get an idea of what might be going on. We rolled her down to the imaging department, and she finally perked up a little and looked around; the "fresh" air of the hallway and the new sights got her attention for a little while. She dozed during the CT scan (my phone didn't save the picture!) but woke again as soon as we moved her back to the crib. She takes 5-10 minute cat naps, but wakes back up again.
The next step was to check that her shunt is functioning properly. A neurosurgeon came to "tap" the shunt. She stuck a needle into the resevoir under the skin and took a sample to culture. She also checked that it was draining into her stomach properly...it wasn't.
The preliminary results show bacteria in the spinal fluid. She is exhibiting "altered mental status". One of the doctors mentioned meningitis. Her antibiotics have been ramped up to cross from her blood into spinal fluid (the two fluids don't touch. Only certain medications can cross the blood brain barrier. This is part of why her chemo is so severe, too). We hope to get more information in the morning.
Just before I hit "post", the neurosurgeon came back for an update. There is a high level of bacterial infection in her spinal fluid. Basically, her shunt is infected, and is draining infection into her abdomen. She is scheduled for surgery first thing in the morning to have the tube from her shunt pulled out of her abdomen and hooked to an external bag. It is a short, simple non-invasive procedure that should take less than an hour (small beans in Scarlett-land).
We will be transitioning between oncology and neurosurgery teams, and moving to the PICU, so I won't be able to post an update until we are settled somewhere later in the day.