The latest...
October 26, 2013, 9:13 PM

I wanted to offer the latest updates following Lee's appointment at the Neurology Clinic in Seattle and further correspondence with her New York neurosurgeons. First, let me thank all of you for your prayers ahead of the Seattle appointment. Lee has been struggling significantly with managing her pain and energy levels, so just getting to the appointment was significant. The neurologist we saw there is one of the most kind, compassionate, and competent specialty physicians we have seen in our time here in Washington. She remembered well having evaluated Lee over four years ago during a consultation with the Neuromuscular Clinic and spent a significant amount of time reviewing Lee's history and evaluating how her condition has evolved and deteriorated since our last visit.[...]

The latest and next steps October 14, 2013, 3:01 AM

We wanted to provide a brief update on the past several days at home and the known next steps with Lee's doctors. She saw her primary care doctor early last week and they made some adjustments to her pain management regimen. The medication adjustments have provided some significantly better control of Lee's head and leg pains but also leave her very groggy and with limited energy. We are certainly thankful for the reduced discomfort but are also hopeful she can find a balance that doesn't cause her to be so sedated all the time.[...]

Home again
October 2, 2013, 9:51 PM

Lee is just getting settled back in at home after being discharged this afternoon. We still don't know for certain what/where her infection was centered but the doctors are leaning more toward a severe viral infection and less toward the bacteria being the primary cause. They removed her central IV line and are culturing that too in order to check further about the bacteria but the most likely scenario is that we will never know for sure. Without the IV they've had to change all of her medications back to pill form, so that transition is taking some getting used to and created some increased pain, but we are hopeful things will level out as she gets on a regular dosing schedule. She will continue on oral antibiotics for a few more days to make sure any infection risks are taken care of and she will see her primary doctor for follow up on Monday unless something more urgent arises in the meantime.[...]

Resting...
October 1, 2013, 2:44 PM

Steve here and I am thankful to report that have finally been able to get Lee much more comfortable and able to rest. She continues to receive the IV antibiotics and they added a pain medication pump yesterday that provides much more consistent relief thant the oral medications she had been taking through the weekend. Her immune system has provided some confusing responses as she has gone from an elevated to a low white blood cell count in a 24 hour period. The infectious disease doctor thinks this could indicate her infection is viral but we may never know for sure what caused the intense pain and fever. They drew more blood cultures on Sunday evening and those will take a few days to provide any information. The current plan is simply a maintenance one for today in hopes of continuing to keep her comfortable and allowing the antibiotics to do their job if a bacteria lurks somewhere in Lee's system. Her primary care physician is also following up today for a new strategy with the neurology group in Seattle since we did not get to go there yesterday. I am hopeful our next post will be regarding an exit strategy from the hospital and next steps with some of the specialists. We are both very thankful for all of your prayers, thoughts, and
notes and especially thankful for the answered prayer of some pain and fever relief.[...]