Fingers Crossed

Zoe's labs this morning fortunately showed a lower WBC count. I was skeptical at first when I heard that they were lower as we had seen them dip before, only to have them climb the next day. But, according to one of the docs we talked to about it this morning, as her other numbers are down as well (the absolute bands, for those of you who know what they refer to), she is hopeful that this is a sign of things getting progressively better, not worse.

Tomorrow we will know more, and hopefully they will be good things. The big issue is still whether she may have a bacteriological infection that all of the labs and diagnostics used thus far have not been able to catch.

Again, osteomyelitis is the big concern. While not usual, it can present without any accompanying fever or other symptoms. The screening (scintigram) test that is normally used to diagnose it would not work on her in her post surgery state. The cut-up and traumatized bone would definitely flag her in the screen--so it wouldn't be possible to discern a false positive from a true positive result.

Dr. Hopper, the plastic surgeon wanted her to be started on antibiotics for treatment of possible osteomyelitis in his concern about her numbers. Fortunately he is not the one to make the call, and the doctors who are are much more cautious about moving forward with such an approach.

Treatment for osteomyelitis involves at least six weeks, if not more, of antibiotics. Without knowing if she actually has osteomyelitis, let alone what bacteria would be causing it, prescribing the appropriate antibiotic would be a shot in the dark. Treatment would delay the start of her BMT, and could possibly affect the course of her BMT in that she would be starting the transplant with a possible resistance already developed against an antibiotic which may be needed to help her survive the transplant process.

So, the team assembled to make the decision about where we go from here is very aware of and concerned about all of this. We are all fervently hoping that her lab numbers from tomorrow morning's blood draw continue to show a downward trend. They have temporarily stopped her blood thinner shots in case they need to do a lumbar puncture to get a cerebral spinal fluid sample for testing tomorrow if the labs come back elevated. Testing the CSF would only tell us if there is infection in the CSF, not if there is a bone infection.

So, again, pray for lower WBC's--as well as no osteomyelitis!!

We are in a new room due to the pity that the nursing staff have taken on us. We had been in a double room and managed to have three of the four nights we spent there to ourselves. The night we had a young 4 year old room mate and her mother was hellish. It is quite enough trying to manage our own trauma and sleep deprivation, without having a front row seat to another family's pain as well.

Monday night we got word that we would be due for another room mate--this one 6 months old, and when the parents brought him in, screaming. I was ready to join him. A week and a half in the hospital, barely enough sleep each night, and now this? Argh! My sense of self preservation was definitely trumping my capacity for empathy. Our good nurse begged her charge nurse to put us in a single occupancy room, and lucky for us we got moved.

We are now in Giraffe 3007 if anyone needs to know.

The CT scan yesterday actually showed that her head does NOT appear to be leaking CSF into her scalp on the right side. Visually, it looked like her head was growing, but the CSF showed it was not. Phew!

Also, someone mentioned today that they were given the impression by my description of the surgery that it was not successful. Sorry if I have given anyone else that impression. Her head is well put back together, there were some tears and patches made to the dura, and the optic nerve decompression was not attempted as it was ruled too risky based on what they found. CT scans have shown that the main goal of vaulting and reshaping her cranium was successful.

And, if the numbers come back the way we want to see them tomorrow, the surgery will have succeeded with flying colors.

Aside from all the uncertainty about what is percolating inside of our girl, the way she is acting is more and more like the Zoe we know and love. She smiles frequently, kicks, talks and cries like her old self when she's not getting what she wants. She's skinnier than she was, so I'm feeding her as often as she wants to eat.

We just have to work on this new biting jag she's on.