"Need You Now"

"Need You Now" by Plumb

Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beatuy here
'Cause oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh, I need you
God, I need you now.

Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Though I walk,
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take

Again, we thank you all for the support and prayers.  I wish there was more that others could do to help us, to somehow take this burden from our family, but everyone is doing everything they possibly can to help us right now.  We just have to keep putting one foot in front of the other to somehow get through this.

Yesterday was a long, long day.  Anna's day nurse ended up spending almost the entire day just with Anna (doing the bare minimum with her other patient), and still had to stay after hours for about 2 hours to finish up her tasks and paperwork.

Sunday night and Monday morning Anna's fever came back.  It never really went away completely, but it started spiking again pretty high.  The temperature was able to be kept a little lower with the help of Tylenol, but her fever symptoms (high heart rate, shaking, feeling cold, etc.) came back as soon as the medicine wore off.  Anna's CSF (cerebrospinal fluid) is being tested every day.  Although the cultures keep coming back without new growth, Anna's white blood cell count in her CSF came back much higher yesterday than it was on Sunday.  Infectious Disease was concerned that the staph (not spelled "staff", like I did earlier :) was not being effectively treated, so they switched up Anna's antibiotics yesterday evening.

In addition, Anna has a pocket of infected fluid in her abdomen.  Since the shunt drained into the abdomen, the bacteria was also being dumped there late last week.  The docs have told us that sometimes a person's body attempts to encase the infected fluid, and it appears that Anna's body has done that.  This particular problem may need to be treated in a different way, but we're not quite sure yet how that may happen.

Because of (we assume) all of the antibiotics, Anna's guts are all out of wack again.  An attempt was made over the weekend to start her feeds again.  However, yesterday the decision was made to start her right back up on TPN instead of going through the whole ordeal again with the feeds, especially since plans were made for Anna to be sedated in the afternoon (more on that later).  Even though Anna's feeds were stopped at about 10 yesterday morning, she pooped all night long, literally, and didn't sleep more than about 3 hours total.

Since Anna still has three radiation treatments left, one of the discussions yesterday was how to make that happen.  Because Anna's head now has a drain coming out of the right side, and she has the gauze surrouding it, the fit of her mask needed to be checked.  We tried about midday yesterday, without much luck.  They tried later in the afternoon with the help of sedation, and with a bit of trimming of the mask, they were able to make it fit.  This is good news for the radiation oncologists because then they didn't have to remake the mask and replan Anna's treatment.  However, the only way for this plan to work is for Anna to be sedated for her last three treatments.  We're okay with the actual use of the anesthesia at this point, but not for the reason.  She needs to be sedated so that she can't feel the pain on her incision when her head is clamped down.  :(

We have a new nurse today.  Imagine that.  With how long we have been here, we are working with a nurse we have never met.  Hopefully we don't have to see her nearly as much as we saw our nurse yesterday.

Please continue to pray for strength, wisdom, and healing for all, but especially for Anna right now.  God has already granted us many miracles during this journey; I hope He is still willing to give a few more.