Wednesday, May 1, 2013

Hospital Life...Day 37

Today is Day 37.  If you missed yesterday's post, you can read that HERE.

Today we had our family conference.  Ron and I attended a meeting with several from Peyton's medical team: a nurse practitioner {she has been working with us for the past few years who deals with pain management as well as supporting us by coordinating with the medical team when Peyton has been admitted}, one of Peyton's primary nurses from the unit, two of the residents from Peyton's current team, the attending from her team, one of the attendings who has been with Peyton once before on this admission and who is scheduled in the next week or so to be back on the rotation}, the first attending who Peyton had on this admission{who also happens to be someone who knows her quite well, having worked with her for the past few years}, one of the doctors from the PICU upstairs, and a nurse from hospice.

We're 37 days in to an admission which has no end in sight.  Peyton has had numerous issues.  We have been going around in circles, with new issues popping up and old ones resurfacing.  There is no easy way to say this, so I will just say that after much discussion between Ron and myself and over the past days with the medical team, we have reached a point in time where it is appropriate for us to shift our focus to palliative care for Peyton.  I cannot say what this means for her in terms of time.

As we transition into this next phase of care for Peyton and season of life for our family, we truly covet your prayers.  This has not been an easy place to come to and this has been a long and difficult journey this past month.  Moira is now aware of what is happening, so please pray especially for her.  I cannot imagine being 9 years old and going through this.

Thank you to all of the medical team here at MUSC who was with us in our meeting today.  While the decision was ours to make, you helped to bear the load as much as you could.  We appreciate your thoughtfulness and your words of comfort and reassurance.  We appreciate your time and willingness to be a part of this process with us.  We appreciate all that you have done for Peyton from a medical standpoint but we also appreciate you showing that it's not all about science and medicine - that there is a compassionate side to what you do {which we have felt all along}.  We appreciate that you are standing there crying with us through this pain.  Thank you for the honor and dignity you are affording Peyton during this time.

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