Hi, friend,
Life is plugging along here.
Last week included a lot of heart moments for me, but I'm trying to frame these
experiences as building my emotional stamina :) I'm good when it's just
our family, but stepping out of that comfort zone can still be hard.
Last Tuesday we had our first group
meeting with an Agrace grief support group. Several close and trusted friends
recommended this to us. We opted to wait until there was an opening in a
group where families had also lost a child/sibling. I think our first
meeting went well. I'm hoping that the experience will continue to ease
our feelings of isolation (we're certainly not the only ones who have to deal
with crappy situations) as well as give Ethan and Kate the opportunity and
space to process their lives in a healthy, supportive manner.
I subbed on Thursday afternoon for
the first time since Anna's death. Four hours was about all I could
handle, but I'm glad I got this first one over with.
Friday we met with our
friend/advocate/medical overseer Lynne (a.k.a. PICU nurse practitioner who
probably runs the show there more than anyone else) to go over the autopsy
results.
Big picture ... Anna had viral
sepsis that became complicated by DIC. The assumption is that she has
mastoiditis which quickly turned septic. In spite of the honest and
sincere efforts of several talented medical experts who did a lot of digging
and asked plenty of questions, that's all they can say for sure about what DID
happen. They know the sepsis was not bacterial and that the virus was not
anything typically found or tested for, but not much else.
There's no clear evidence of how the
mastoiditis began, either. Although Anna had severe ear pain, causing her
eardrum to rupture while in the ER (we think ...), I still don't think she had
a normal ear infection. She'd never once in her life had an ear
infection, and 4 different medical professionals checked her ears during her last 36 hours and all said they
were clear of infection.
After several months of waiting,
wondering, and questioning, I'm okay with the lack of information. We
always knew that science didn't have all of the answers, but perhaps the lack
of answers surrounding Anna's death has provided me with more evidence of God's
hand in everything. I'm not saying that God wanted us to suffer, but I'm
saying that God made sure that we suffered as little as possible (even though
that "little" suffering is almost too much to handle some days).
Did I tell you that Anna was
scheduled to have her next MRI on Tuesday, January 8? My heart and my
instincts as a mother tell me that something would have shown up on the MRI
that would require us to make treatment decisions. My biggest fear these
last few years had been that Anna would develop a secondary cancer and that we
would have to decide (with her input) if and how to treat it.
My heart and my instincts also tell
me that Anna died because her body was pumped full of so much poison in
2014. Lynne said "off the record" that her treatments probably
played a role in her death, but that there was no medical evidence for this.
I've had a lot of internal debates
involving science and faith during the last few months.
I'm fairly confident at this point,
too, that I could not have done anything to prevent the end result of this
illness for Anna. In fact, by advocating as much as I did during Anna's
last days, she was in the ER at the children's hospital before things became
visibly serious. Matt and I have talked about how much worse the whole
experience would have been had things turned serious in our own home in the
presence of Kate and Ethan.
Again, less suffering for those of
us left behind.
Anyway, thanks for reading all of
this. After a few weeks of not having words running through my head, I
had a resurgence of thoughts over the weekend. The more I put these
thoughts into words, the less they are stuck in my head :)
Hope your night on duty went well
last night and that you are sleeping right now :)
Sara
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