Hard to breath

It’s been quite some time since I posted anything to this blog, and not for lack of occasion to record.  It’s more consequence of time deprivation, or, more assertive priorities with what time I have.  Work has been particularly consuming, and outside of that, our family is in a demanding phase.  But here we are, back in Cincy, long hospital days, and though caring for Nicole in the ICU is keeping me on my toes and denying me as much “work” time as I thought, I needed to steal a moment this quiet Sunday morning to share with our spiritual family and friends where we are, more specifically, where Nicole is in her recovery. 

We committed to a permanent fix for Nicole’s airway disease less than a year ago.  January or February of 15 seemed to be the best time for everyone concerned, but, as time wore on, the need to take action sooner rather than later started to deny us the option of putting it off further.  It was a combination of factors.  One, according to Dr. Rutter, her surgeon, an ulcer had most likely formed around the stenosis and this ulcer was producing mucus.  With a shrinking airway, this mucus was a problem.  Increasingly a problem the smaller her airway became.  There were several times when the flow was totally impeded and she was unable to breath.  Panic would set in, then dizziness, but each time she was able to clear the blockage before passing out.  Furthermore, the dilations became more aggressive the last two rounds which bought us more time between the treatments, but that time was diminishing.  Dilations delivered diminishing returns.  Her last dilation was in October, and by mid-January, her trachea had closed down to 5 mil from the female norm of 17 mil.  So the path we were on was becoming increasingly unsustainable.  This was, according to our intuition and the experts, the route to take and the time to take it. 

Once we committed to this course, the timing lay in limbo for a while because our doctors practice at Cincinnati Children’s but they needed to secure a block at UC Medical Center for the surgery.  The two research hospitals work hand in hand on many things, but the world’s leading lights in airway work are pediatric primarily.  So finally, on December 10^th, we were given a date for voice labs and surgery.  Transitioning from theory to reality triggered something in Nicole and tossed her into a terrible anxiety.  This anxiety was halting at times, triggering full-blown panic attacks that shut her down.  Thankfully, Dr. Harnsberger was prepared for this, or, at least was not in the least surprised and jumped on top of it right away with the proper medication to contain it.  Panic attacks still surfaced in a milder form, but she had some chemical ice water to throw on them when they reared their ugly little heads. 

Nicole worked very hard trying to set all of her and our household’s affairs in order before our departure for Ohio.  She hardly took a break until we loaded up this past Tuesday morning and hit I-75 North.  That afternoon, she was video scoped at Children’s and her voice was recorded in a secure, sound-proof booth (because there was little doubt that her voice would be altered by the resection), but then we had two days off before surgery Friday morning.  Thursday I ran to Indy on business and Nicole elected to pretty much stay in our hotel room, in bed, resting and trying to relax these two days.  At times, she was an emotional mess, but how could she be otherwise.  Spontaneous bouts of weeping might hit at unexpected times, then pass as soon as they came.  Talking to the kids seemed to magnify her fears because she not only longed to be with them, and to have this cup pass her by, but the fear said things to her designed to produce panic.  Full of fear the night before, God was kind to her and gave her a good night’s sleep.  Myself on the other hand, though I had no feeling of anxiety, I was unable to sleep till roughly 2:30 Am and we had to awake ot 4:30, so even with the aid of two cups coffee, I was still a bit out of sorts.  But again, pre-op, Dr. Rutter, our cut-up of a cutting edge surgeon helped lighten the air and thin our emotional load.  So effective was his good nature and our prayer – not to mention the happy meds – that Nicole was taken back with a nervous smile on her adorable face.

The surgery took 5 hours.  That’s about what they originally anticipated.  However, once they got in there, the area affected by the stenosis was much longer or deeper than the scopes had revealed looking down from above.  Dr. Rutter anticipated removing 1cm of her trachea and cricoid cartilage (which connects the trachea to the vocal cords within the larynx).  Turns out, the stenosis was roughly 2.5 times larger than previously thought.  Dr. Rutter had to resect 1” of her trachea and cricoid, but he was optimistic about recovery. 

Recovery has gotten off to a bumpy start.  We are in the Burn Unit ICU at UC Medical Center for our third day.  While I fully anticipated each day to lighten her pain and burden, it seems to have gone the opposite direction.  The first day, they were either unable or unwilling to get her pain under control and she somewhat over did it, but her low blood pressure prevented them from administering the meds needed to get in front of the pain.  This also prevented any sleep all day until after 1am when they finally gave her morphine after providing her body enough fluid to produce the requisite rise in blood pressure.  The nights have been the hardest for Nicole because I slip out to catch some sleep at the hotel and the night shift nurse is too often MIA.  Last night in particular she was flirting with despair. 

When I got back to the room this morning the ENT team from Children’s was crowded around her.  There was some concern about the swelling around the resected area in her throat.  There was also concern about the reddening of her skin in the upper chest and lower neck which could indicate infection.  Her breathing was wheezy, she was coughing more and periodically she was coughing up blood.  So, one of the doctors cut a stitch out to loosen the skin around the neck drain then ordered a chest x-ray and sent a photo of her upper chest and neck to Dr. Rutter.  This afternoon they are going to draw blood to test for elevated white blood cell count and our nurse has gone to talk to the team about getting something that an ease the soreness and pain associated with swallowing.  The first day out of surgery, she was able to speak, though low and gravely, one could understand her.  Now, in day three she can hardly whisper and is consistently sucking blood or fluid out of her mouth coming up from her throat or lungs.  The pain does not seem to have diminished and she has become weaker with time because it has been so painful for her to eat, she has done precious little for the past few days.  Nicole is communicating with myself and the nursing staff by writing on paper which has frustrated her at times. 

Honestly, it’s hard to put to words how difficult this pain and this battle must be for her.  Today, she has all but shut down.  Breathing is loud and hard.  She does not want to eat or open her eyes.  Presently, getting any response to questions is difficult.  I haven’t a clue what is going on, but I know the staff her seems at a loss on how to ease her suffering.  Morphine has taken the edge off the pain, but there is a biting soreness in swallowing and even breathing at times that the drugs seem powerless to control.  I cannot know what is going on in her heart and in her head because it takes too much to communicate right now, she only conveys immediate needs.  I know there are many who have walked through similarly tough valleys themselves or with loved ones, and I know this journey and battle is not unique to the human story, but it is unique to us.  Us, a sometimes rough, sometimes distant, sometimes hurting, and sometimes even opposing entity, but there is a one and solid us.  She and I and I cannot reach into the dark place where she is right now, but I pray the voice of God will shine on her somehow and it might stave off the noise of despair.