Still "punked"

Several weeks back, a nurse used the term "punked" in reference to a kid feeling generally out of sorts.  Anna is still "punked".  Though her fevers were trending downwards, the neurosurgeon thought that the bacteria had been present long enough with the drain in place that the bugs had most likely adhered to the drain itself.  We learned from the infection disease doctors last week that once a bacteria is adhered to plastic inside the body, it cannot be completely destroyed with antibiotics; the device must be removed.

So this evening Anna is having her fifth brain surgery, to remove the current EVD and replace it with a fresh one.  Hopefully once the new drain is placed, the megadoses of antibiotics she is receiving will take care of the rest of the bacteria, and then we can start counting down the days until she has had enough negative cultures to be considered free of the bacteria.

Today marks the seventh day in a row that Anna has had a fever.  She needed another blood transfusion today as well as several platelet transfusions to be prepared for the surgery.  Her feeds were stopped today in preparation for anesthesia this evening.  Her blood pressures continue to run high.  Her radiation effects are peaking at this point.

She's listened to a lot of books this week and watched a bunch of TV, when she's up for it.  She's really tired and doesn't want people to bother her.  I know she's feeling pretty punked still, and it certainly makes for some really long, sad days to spend together.

Matt is spending this weekend with Anna and I'll be with her for at least the start of next week, until we see how she's doing after this most recent surgery.  Matt is taking all next week off of work and, depending on how Anna is progressing, we may have a friend stay with Anna for a day or so at the hospital so that Matt and I can be home together again for a little while.  So many decisions are still being made, however, and so many people are involved in Anna's care, that we still feel pretty strongly about being the ones physically at the hospital until everything settles out again.  Besides, when Anna is feeling as sick as she is, she doesn't want anyone but Mom or Dad around.

We miss our life.  Matt and I miss being together in the same place and running our family as a together-team instead of as a tag-team.  We miss having all five of us together in the same place; so that it doesn't feel like anyone is missing.  We even miss our life back on P4; the freedom, the flexibility, and the relative fun.  This is really hard.

Time for prayers

Thanksgiving
Please give thanks for the relative consistency we have had with Anna's care givers (nurses and doctors) in the past two weeks; it is nice not having to review Anna's case again and again.
Please thank God for sleep rooms at the hospital; I don't know how we would do this if we were still sleeping in Anna's room every night.
Please give thanks for the flexibility of Kate and Ethan these days with their different care givers.
Please thank God for friends, both new and old, who have helped encourage me personally during this hard week.
Please give thanks for the continued support our family is receiving from friends; our fridge is always full and now our house is really clean :)

Requests
Please pray that we are able to feel God's presence during this journey; this last week, in particular, has felt very lonely.
Please ask God to grant Anna peace and healing after tonight's surgery.
Please pray that the bacterial infection is cleared up soon.
Please ask God to heal Anna's body this weekend, especially so that she feels better soon.
Please pray that Anna's treatments are 100% effective and that she experiences few side effects, especially during her upcoming chemotherapy.
Please continue to pray for strength, wisdom, peace, and patience for Matt and I, and any others directly involved in caring for our children and family.