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. 

Thanksgiving Blessings

[Following post written by Ashley's husband, Mark Bonnema]

Yesterday Ashley was admitted to Sanford for low blood oxygen levels and continued lung function decline.  That afternoon, with the guidance and advice of her CF team at Sanford, she was transferred to the CF team at University of Minnesota in Minneapolis for continued care.  We are so very grateful for her team both at Sanford and at U of M.  

There is a deafening silence about our room on the 7^th floor of University of Minnesota Fairview East Bank Hospital this afternoon. Ashley sleeps with fervor, as though it is her body’s one true desire and the only worthy way to spend her time and energy. Disrupting the grunts and groans of labored, heavy breathing is the occasional grind and hum of the IV pump, slowly turning her blood into a toxic solution – toxic to both bacteria and her usual vitality. 

Days may pass this way. Will the antibiotics and treatments be effective? Will the breath and spirit of life once more course through Ashley? Only time will tell. We must trust the situation to the hands and minds of those with expertise, her fearless and ever encouraging physicians, nurses, and hospital staff. We certainly are thankful for them today. True lifesavers.

A room with a view

And then there are all of you… ever positive, ever encouraging, ever concerned, ever loving. We feel surrounded by a cloud of your prayers, engulfed by the presence of the peace you have so diligently sent our way. Thank you to each and every one of you. We are ever thankful for each of you as well, knowing full well there is no way to ever repay your kindness, yet grateful for it in each of the many ways you have found to express it.

The plan is to continue with several forms of antibiotic and antifungal medications throughout today and tonight. Nebulizer/vest treatments also continue at regular intervals. Tomorrow Ashley will have a lung function test to see what, if any, progress is being made. The plan will adapt from there: different antibiotics, medications, etc.  For the first time ever, however, the words “lung transplant” and preparing ourselves for making that decision in the future was mentioned.  I don’t think anyone is ever ready to hear those words, nor did Ashley or I ever really think we’d ever have to hear them.   Right now, we are going to focus on fighting the battle at hand and getting Ashley well and back home, all the while cherishing each other and the fact that we can be together in this battle.

A Thanksgiving Day Blessing for my wife and for each of you this day:

May many a family and friend never cease to surround you

May you feel content and safe in your body and home

May peace seal your heart in times of unrest

May joy fill your mind and endow you with wonder

May gratitude be your nature, no matter the circumstance

May the breath of life always move you in a blessed direction

May love abound in every way, and never be far from your door

Illumination of Gratitude

To be humbly grateful for every moment, relationship, and breath both past and present, while still holding out hope for all the greatness yet to come, is something I will forever strive to embody and illuminate.

In the darkest and most difficult of days, the glow of gratitude that burns within can seem as if it grows dimmer with each setback, each realization that I am not in control, and each panic stricken gasp for air. To say these past few weeks have been difficult, incredibly emotional, and frustrating would be an understatement.

A Stranger
I am a mess of emotion.  I have found it harder and harder to keep my emotions in check, to paint a stoic, strong, and graceful façade on the for world, and to hide my own growing disappointment in myself and my lack of control over CF.   Never once have I ever felt that CF has had control over me. Never has CF threatened to dampen the glow of life from within, never have I felt it has threatened to get the best of me.  Until today.  CF is relentlessly attacking my body and mind.  My body aches with every breath, cough, and movement as if every rib and muscle is bruised beyond beating.  Not to mention the beating my body has been taking from antibiotics and medications coursing through my veins.  The worst part of it all isn't the battle raging within my body, it's the battle raging within my mind: feeling like a complete stranger and prisoner in my own skin.

In the last week there has been a new PICC line placed, signs eluding to liver damage, the severe side effects of a brutal new drug, the evaluation and stopping of most antibiotics because of stress on my liver, increased exhaustion, low Blood Saturation levels, and continued low lung function that forbids to give me any reprieve.  I can't help but ruminate over what I did wrong, where I took a misstep, or how I could have allowed CF to take such control over me when mere months ago I was feeling the best I have in years.

Illumination
Amidst it all, I still am filled with so much gratitude.  I am grateful for any level of normalcy that distracts me from the reality of CF, anything that makes me momentarily forget:  grad school, friends, teaching, travel, living for the hope that tomorrow is a new day.  I will awake with the hope that I will sing again, that I will drink in air without thought, that I will climb the stairs without every muscle burning, or my body betraying me.  Through the best of days and the hardest of days I will always be grateful.  I will smile through the tears,

Through the mess of emotion there still burns a steadfast glow of gratitude from deep within.  That light can never be extinguished no matter what CF throws at me.  In the most difficult of moments, the smallest ounce of light will always pierce the darkness.

My life is rooted in the endless gratitude I have for each of you.  I am grateful for every single beautiful breath, no matter how deep.  For every endearing word of love and support.  For every meaningful hug that is held for just an extra moment.  For my CF team who means more than they'll ever know.  For my friends and family who tirelessly fight beside me.  For Mark and his unyielding commitment to being strong for me.  For each person who believes in my future.  For each beautiful moment that has made up my amazing life thus far.  With great love and thanks to you all.

Let your life be illuminated by gratitude.  What are you grateful for?

Whitewashed

[Blog entry created by Mark Bonnema]

Ashley got her wish! It snowed six inches in Sioux Falls this weekend – light, fluffy, delicate snow – and Ashley was at home to watch each and every flake descend on the world around her! 

I think the allure of “drinking in a bit of fresh air….” that she wrote about in last week’s blog post wore off as soon as she tasted the bitter cold of our current arctic blast. Yuck. None-the-less, there was a palpable contentment and peace about Ashley’s spirit as she watched the snow from our living room…. memories of her recent hospitalization melting away by the fireplace. The boys (Cooper and Kalvin, our dogs) were out of their minds with excitement that Ashley was home, and ensured Ashley did not have to endure even a moment of loneliness as I was away working at the hospital over the weekend.

The first major snow of the impending winter is always a bittersweet affair.  While it is cold, icy, and treacherous, it is also lovely and fresh. The grays and browns of late fall are painted over with a whitewash of delicate snowflakes.  The world takes on a new allure and promise. After a bit of adjustment to the new temperature norms, you can almost see past the cold into the majestic beauty that is winter.

*It was here that I was going to write about Ashley, and how she is not able to undergo a whitewashing of her lungs, to have them renewed and rejuvenated, as cystic fibrosis is a progressive disease that is always adding to its cumulative damaging effects on her lungs. But, Ashley suggested that instead I write about something much more difficult…. me. Me and my experience during the difficult periods when CF is acting up.*

Honesty & Truth

I opted to keep the theme of whitewashing. It betrays perhaps my greatest and most pathological coping mechanism in regards to the effects of cystic fibrosis in our lives. I have a tendency to whitewash difficult situations.  My default is to slap an “everything is ok” response on any and all inquiries from friends and family, and also on my own internal monologue. “She’s doing ok today….”  Or “I’m doing fine… everything is great.” These statements mask the truth. They whitewash situations filled with fear, uncertainty, risk, and powerlessness.

Ashley’s recent hospitalization was a trying one. She had great care from the healthcare team, and the hospital staff is always very kind and gracious to us. But Ashley’s health was at the worst of her lifetime during the hospitalization. Three days after her surgery and bronchoscopy, Ashley spiked a temperature of 102°F. I’ve never been so scared. She had been on antibiotics for the past five weeks… what could be causing a fever so high? Is there a new infection in her lungs? Has the infection spread to her bloodstream? Will her PICC line have to come out? Could she be having a pulmonary embolism? Will she be ok? Will her oxygen saturation stay up? Will she lose the lung function she worked so hard to gain over the past 2 years? Will she be able to come home soon and make our house a home again? Will she be able to keep doing what she loves in practicing, performing, and teaching music? Will she have energy and time for me?  

Rather than dwelling in the uncertainty of these 

fears, I do what I am all to good at- convince myself that “everything is going to be alright.” Whitewash the situation to make myself feel more at ease. Hide the fact that I feel powerless and helpless. Betray my fears of uncertainty.  Don’t let anyone see that this is difficult and trying.

I am not as brave as Ashley. Rarely do I feel the courage and conviction that she displays every day as she faces cystic fibrosis head-on, with honesty and relentless hope. While she faces the difficult and sometimes ugly truth that is CF , I cower behind a whitewashed façade, blindly hoping the troubles and trials will go away.

Yesterday, Ashley’s lung function was 33%, her lowest ever. It is declining rapidly. I am afraid for her. I am afraid for our life. I am afraid for our future.

Sometimes there just isn’t enough paint. Perhaps this is a situation for some cleansing tears. Stay strong,  Ashley. Breathe bravely. I believe in you, I will be here, and I love you.

What are you trying to whitewash?