We came home...
Saturday, February 23, 2013
We are home
more updates
As you have seen from recent photos, Claire is surprising us with good days. Rebecca Hales
and I would like to reiterate that our rational minds do not think this
will necessarily last. However, we are now at a place where we must
consider next steps. Tomorrow we will begin planning on how best to
bring Claire home. We will likely use Hospice. I ask you to continue to
pray for us. We need to make a plan
that makes this as comfortable as possible for Claire if things turn for
the worse while she is at home. Quite frankly, as experienced as we are
with medicine, Hospice and Post Mortem planning is scary and stressful.
But this long term hospital stay is waring thin. — at Doernbecher Children's Hospital.
Tuesday, February 19, 2013
small favor to ask
Hello, my name is Traci, I am a friend of the family... I do my best to keep this blog updated for Jacob and Rebecca to give them as much focus on Claire as possible. So this is me Traci, asking you, friends and family of the Hales to do me (them) a favor. Three years ago my husband and I almost lost our son and my myself due to being born 12 weeks premature and other complications, through all the highs and lows we too were surrounded by prayers and support like Jacob and Rebecca. We asked this small favor and it blessed us in ways we never could have imagined... the Lord has put it on my heart to do this same thing for the Hales, but I need your help... Could you send me an email with
your first name and city, I will compile
them all and it will be a comfort to see just how many people, even
complete strangers, prayed for them... Send it to freckles279@hotmail.com. Also pass this request
along to others that you have shared this story with and are praying even if you don't know the Hales personally...
Thank you for your time, thank you for caring so much. Jacob and Rebecca's faith through these years is nothing short of inspiring and encouraging. Please take a moment to consider this request. May God bless you and your family with health and quality time with your own loved ones.
Sincerely, Traci
Thank you for your time, thank you for caring so much. Jacob and Rebecca's faith through these years is nothing short of inspiring and encouraging. Please take a moment to consider this request. May God bless you and your family with health and quality time with your own loved ones.
Sincerely, Traci
Claire's update
I apologize for the lack of update in a few
days, but honestly, Claire is doing her typically thing of throwing us
surprises that we weren't sure how to describe. She is stable and only
had light seizure activity over the past 72 hours. We have been
hesitant to share this as we don't wish it to be interpreted as great
news, improvement, or progress. We suspect it is a honeymoon period
from her newest drug Depakote. This has
allowed us a reprieve, getting her exubated, and gaining us some quality
time with Claire at her baseline. However, honeymoon periods rarely
have lasted more than a week for Claire and there is still the
substantial risk of liver failure in the near term. We plan on keeping
Claire at Doernbecher's for at least this week and we will begin a
re-evaluation on Friday, assuming she continues to do this well. Beware
that Rebecca and I are thankful for this time but, noting Claire's
history, we are not optimistic that the honeymoon will last much longer.
Your prayers and outpouring of love has no doubt contributed to this
reprieve. The support and kindnesses carry us forward each day. To
that, I humbly thank you. We will keep you apprised as events occur.
Monday, February 11, 2013
Faced with
Rebecca
and I are faced with the toughest challenge as parents. We have tried
every medical treatment available to science to gain control of Claire's
epilepsy. In the past, Claire would lose seizure control whenever she
was sick. But more recently, Claire has had to come to the hospital and
be intubated with no detectable reason other than drug levels becoming
unstable. This is a sign that either her
brain or liver (or both) gained tolerance to her meds. Last Thursday,
after only a 27-hour stretch at home, Claire returned to the ICU and was
re-intubated. In a last ditch effort to gain seizure control, we put
Claire on Depakote, which in combination with her other anticonvulsants,
places her at a high risk of liver failure. Claire has only had a
maximum of 2 weeks seizure free on any medication. Having expended every
medical option to try to give Claire a good life, we have come to the
conclusion that constant seizing and intubating is not giving Claire the
quality of life she so deserves. We have decided this will be her last
visit to the ICU. We will not resuscitate or re-intubate her moving
forward. If her recent patterns hold constant, we suspect that Claire
is in her final days of life. We ask for your continued prayers for our
strength and peace in this time.
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