Still underway... December 12, 2013, 9:00 PM

I was trying to hold off on posting until there was more definitive news but I know many of you are actively watching and praying, so I wanted to tell you all I know which is that about 2 hours ago they called out from the O.R. to say that all was going "fine" but they didn't offer any updated timelines. They were a bit delayed in taking her back, so we are just now approaching the 8 hour mark for when she went into surgery.[...]

Underway!
December 12, 2013, 1:27 PM

Good morning, Steve here....first let me say thank you so much for ALL of your prayers and notes (and happy birthday wishes). Lee was just rolled into the operating room and insisted that I let you know she was at peace and doing well. She specifically asked that I share John 14:27, "Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts to be troubled, neither let them be afraid." This verse has meant a great deal to us over the past two days.[...]

Prayer Schedule December 11, 2013, 6:35 AM

Hi everybody, this is Stephanie.[...]

Evaluation Day December 10, 2013, 1:03 AM

First of all Steve and I want to express our gratitude for the outpouring of support we have received since posting our last update. Thank you so much for the messages, the cards, the financial gifts, and the many, many prayers.[...]

Decisions
November 20, 2013, 5:04 PM

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and the wisdom to know the difference. This well known prayer really sums up the heart and mind struggle I have been in the last many weeks. To know what symptoms won't change with surgery, courage to know to proceed with surgery if it can change things and then the wisdom to know the difference. It is the wisdom and peace I have been seeking and praying about.[...]

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.[...]

Back in the hospital... September 29, 2013, 8:48 PM

Lee is back in the hospital to receive IV antibiotics. Her primary care physician called this morning to update us that one of the blood cultures had finally shown some type of bacterial infection. There is a limited chance that it could be meningitis so they have her on isolation precautions until more definitive results are available sometime tomorrow. She had gotten some level of relief and better rest with the medicine changes the doctors made late Friday and was pretty disheartened to have to head back to the hospital, but the infectious disease doctor that her PCP consulted felt that the inpatient IV antibiotics was the safest course of treatment. We are just getting settled in and they are preparing to start the antibiotics via her central IV but she has gotten behind on her pain and fever medicines with the transition from home to the hospital so she's pretty uncomfortable at the moment, so please pray for timely relief.[...]