A Season of Waiting

[Following Blog post written by Mark Bonnema]

A sincere thanks to all who have offered their thoughts, prayers, and love these last few days. Ashley continues to be hospitalized at the University of Minnesota Fairview Hospital with an exacerbation of a pulmonary infection. Her care team is uncertain if the problematic culprit is an antibiotic resistant bacterial infection, or an intractable fungal infection.  Regardless the cause, Ashley's lungs continue to feel and act like a wet sponge... so inflamed and full of fluid and mucous that they repel oxygen rich air. Her lung function continues to fall, reaching new lows for her. Shortness of breath, headaches, and extreme fatigue are the current norm. Ashley is beginning to wonder if she will ever be able to walk down the hall or up a single flight of stairs again without feeling like she will pass out.

Most hospitalizations for Ashley start out with the same routine... Ashley politely declines to wear a hospital gown in favor of her own clothes, she tells the hospital staff she has not traveled out of the country or been in contact with anyone displaying ebola symptoms, and... she provides a sputum sample. The hospital lab then takes the sputum (i.e. phlegm or lung mucous) sample and cultures it, allowing any bacteria or fungus present to grow on a nutrient rich petri dish. Any bacteria or fungi that grow are identified, and then a sensitivity  test is conducted, where the microbes are exposed to different antibiotic and anti fungal medications to see if they are resistant or susceptible to each medication. Ashley has progressed deep enough into her journey with CF that the bacteria that she cultures in her sputum are resistant to almost all available antibiotics. She has had to use the common antibiotics too often, and the bacteria have learned to survive in the presence of such antibiotics. (Not to worry, these bacteria are usually harmless to the general public with intact immune systems, hence I won't hesitate to steal a kiss from her without worry of becoming infected or developing pneumonia myself).

Currently, the only antibiotic that the bacteria in Ashley's lungs show any slight sensitivity, or potential to be affected by antibiotics, is a drug called piperacillin-tazobactam, which is related to a drug Ashley had an allergic reaction to when she was a child (augmentin). This is a problem. Her immune system, while failing to eradicate the bacteria in her lungs, over-responds and causes an allergic response in the presence of some antibiotic medications. The care team takes this situation seriously, and has a strict protocol in place that requires admittance to the intensive care unit (ICU) for close observation if a drug that has previously caused an allergic retain in a person is to be utilized. Ideally, we would not have to consider using this antibiotic. But in reality, it is one of the only options that remains. We have been waiting since Friday for a room to open up in the ICU so Ashley can undergo a desensitization test for the antibiotic that may be the key to overcoming her current lung infection. The ICU has been full without reprieve since Friday. While we are glad Ashley does not have imminent need to be in the ICU, we also would like to start the piperacillin, which may provide relief from her lung infection... relief from labored breathing, headaches, and fatigue, relief from the feeling that her condition is worsening and stealing her vitality and life.

CF, as a chronic disease, is often characterized by a slow decline in health and lung function and an even slower improvement. When a lung infection is at its worst and lung function has reached its lowest, it can seem an impossible task to wait for the treatments and antibiotics to do their work, all the while wondering if they will even work at all. Days and weeks may pass with little or no change.

See Ashley "Enjoying the ride amidst the wait."

Today was the first day of Advent - a season of waiting in the Christian faith. Ashley and I have passed through the spiritual and mental process that this holy season requires many times. It is usually with joy and anticipation that we enter this season of waiting upon the birth of Jesus Christ. But never before have we been forced to practice and experience waiting like this. It is no longer a mental or spiritual exercise when each and every one of Ashley's labored breaths yearns and pines for relief. Waiting for breath is difficult, it is painful and disheartening, and agonizingly real.

Ashley and I are immersed in a season of waiting. When will we be able to begin the new antibiotics? When will Ashley's lungs begin to clear? When will her breath return? When will she feel like herself again? When will she be able to make music and sing? None of the physicians or members of the care team are able to answer this for us. We must wait. Time will tell. This Advent will be unlike any we have ever experienced before. We will experience true waiting.

Your continued love, prayers, and support help us endure the wait. Thank you.

Wait in joy, heartache, and hope for what tomorrow may bring.