After four months, four hotels, and four hospital stays we returned to Tucson from Boston.
My husband, Simon, now has a reinforced trachea that was meticulously sewn by a very gifted and knowledgeable thoracic surgeon, Dr. Sidhartha Gangadharan. He was treated and followed throughout these months by an equally gifted and knowledgeable interventional pulmonologist, Dr. Adnan Majid.
We are so grateful for their brilliance, their watchfulness, and their continued concern.
I am Louise, the wife, the bedside advocate, the helpmate, the caregiver.
Our story began early this past May.
After winding our way through years of emergency room visits, hospital stays, intubations, temporary stents, ventilators, and induced sleeps, Simon's current interventional pulmonologist recommended and referred us to Beth Israel Deaconess Medical Center's tracheobronchomalacia (TBM) clinic.
We had no idea when we arrived in May where this medical journey would lead, when it would end, or what the results would be. We were advised early that it would not be a straight line. Simon's trachea was 90% obstructed. He was additionally burdened by a trachea that had experienced a number of temporary stents that could possibly have caused embedded infection. His trachea was also a funny shape!
This has been a test for both of us. It has been a long, sometimes harrowing, sometimes downright boring, sometimes exasperating, sometimes confusing, and sometimes surprising journey.
Simon has gone from stent removal, to surgery, to induced sleep, to a hyperbaric oxygen chamber, to bronchcoscopy, to bronchcoscopy, to bronchcoscopy. (We have actually lost count of the bronchoscopies.)
I have gone from day to day to day, sometimes frustrated, sometimes disoriented, sometimes disappointed, sometimes anxious, and sometimes terrified, sometimes thrilled.
Ask anyone who has witnessed the declining health of a loved one coupled with the hope for a cure and you will hear, I am certain, some of the same responses and emotions.
But what stands out in my mind far above my fear, my impatience, and my anxiety is the warmth, the caring, the graciousness, the respect, and the kindness we received from everyone we encountered at BIDMC.
We truly experienced a culture of caring:
How often does a world-class surgeon walk into his patient's room and notice the stress on his patient's wife's face and ask, "Would you like me to call in a social worker?"
How many social workers respond immediately, sit down on the floor next to your chair and spend an hour helping you sort out your emotions and your behavior?
How often does a distinguished interventional pulmonologist take the time before and after every bronchoscopy to explain what will be done and what the results were?
How many times has a logistical question been answered, not with a pointed finger, but by walking you to your destination?
How many nurses give you a list of their favorite yoga studios when you mention that you have a yoga practice at home?
How many nurses insist in using "best practices" no matter how much extra time and effort it might take?
How many nurses stop and tell you the reasoning behind a decision whether it be choice of medication or a choice of equipment?
How many doctors follow up on every question, every concern, every telephone call, every procedure result, and every request?
How many teams of doctors sit down with you and explain exactly what is happening, what they are thinking for next steps, why there may be a difference of opinion, and what each opinion is and why it is being considered?
How many ICUs have a Sal who will bring in his "portable barber shop" and shave a patient whose beard has become uncomfortably sticky through various eating mishaps?
How many orphan diseases have a Jennifer Champy ( a true champion) who puts patients and patients' families at ease with calls and humor and texts and the benefit of her own wisdom and honest experiences with TBM?
We have returned to Tucson with a healthier Simon and a happier Louise. We can feel only deep thankfulness for the compassionate care and outstanding medicine we experienced BIDMC.
Simon will still have a very fragile trachea and will need to be both protective and vigilant in his own care. While this has been at times a difficult journey, the reward is beyond measure. Simon's trachea has been repaired and is functioning well.
We are both reminded of the Shehecheyanu, a Hebrew prayer reserved for "firsts":
Baruch atah, Adonai, Eloheinu Melech haolam, shehecheyanu, v'kiy'manu, v'higianu laz'man hazeh.
We thank You, Eternal our God, Sovereign of all -- for giving us life, sustaining us, and enabling us to reach this moment.
We are so grateful to everyone at Beth Israel Deaconess Medical Center for sustaining us, each in their own way, and bringing us to this moment of wholeness and health.
With deep gratitude,
Louise and Simon