Monday, January 25, 2016

"I Never Saw That Coming"

     One of the first TV/Movie quotes I recall my son using perfectly in context is "I never saw that coming," spoken by a villain in a Lego Avengers show.  About two years ago, something sudden and surprising happened, and my son immediately used this quote in response.  Since we watched the show together, I laughed and laughed, on a slightly deeper level than my wife, who also found it hilarious, but didn't know our son was quoting a show.  This quote has been most apropos during the low and high points of my recent 24 hour medical / emotional roller coaster.

    The preliminary page of results of my bronchoscopy on Wednesday revealed nothing too surprising, based on my symptoms.  Some thick areas of mucus, some inflammation.  All of it lined up.  Since I'd left the clinic the day prior hearing my doctor say that IV antibiotics were the standard treatment for my symptoms, and I'd done IVs at home with my old lungs more times than I care to remember, I assumed I would receive a call telling me that the appropriate medicines would be sent to my home on Thursday.

     When I got the call Thursday afternoon, my assumption proved wrong.  My doctor wanted me to be admitted to the hospital later that evening, as soon as a room was available.  "I never saw that coming..."

     Another factor which made the news worse was that it was being relayed not by my doctor or transplant nurse, but someone filling in while those two dealt with other pressing issues.  This has happened before, and rightly so, but in this situation, I really wanted to have more answers and clarification about why I couldn't avoid a hospital stay.  The notes left by my care team did not have such answers. 

     There is never a "good" time to be hospitalized.  Every time I've been admitted, the same thought process occurs-- what was I planning on doing that I now must cancel, rearrange, or delay?  There is always an event, a project, a trip, or a stay-at-home-cuddling-weekend that is impacted by a hospital stay.  In this particular case, I spoke to my wife, and we evaluated all the things in the near future that must be recalibrated.  The first priority was her cancelling a trip to her hometown to plan a summer trip to Ireland with her mom and aunt.  Anything else we would figure out later. 

     Then came the negotiating.  I talked to my transplant nurse and lobbied for staying at home and starting the IVs.  My biggest hesitation centered around the prospect of being admitted and kept in the hospital into next week, missing work and time with my family unnecessarily.  After all, although I was "sick," I only missed days of work that week for medical appointments, not because I wasn't physically well enough to teach.  Putting me in the hospital seemed like quite a leap.  But the preliminary test results and need for me to be monitored while they put me on an antibiotic I'd not been on before made the hospitalization necessary.  I packed up some clothes, something to read, and my laptop, and prepared to leave.  We explained to my son that the doctors needed to give me medicine and I would be home soon, we just weren't sure when that would be.

     Upon my arrival, I wrote on the whiteboard next to "Goals": Establish medical plan and go home ASAP.  It seemed like wishful thinking as I put the cap on the marker.  But my experience at the hospital could not have been better.  They began giving me IVs almost immediately, through the port in my chest-- which I lobbied to keep after the transplant, since even though I will need it much less frequently with these new lungs, it's way better than having a PICC line (which enters inside the upper arm and goes straight to the heart) placed each time I needed IV meds.  A late-night CAT scan of my chest revealed my right lung had pneumonia, and the final results from my bronch from Wednesday came back, demonstrating that yes, I was on the best medicine for my particular infection.  Evidence of mild rejection also mimics that of infection, so I would be treated for that as well with high doses of steroids.  The night I arrived, when the nurse practicioner said that would happen "three or four days from now" I quickly jumped in to clarify whether or not I needed to be in the hospital for that.  He said it would depend on which steroid approach they went with.  In the morning, they had decided it would be the sort I could take orally at home-- all of which meant that I could leave later that day.  Once again, "I never saw that coming."

     My wife and I spent the day together, since she had already expected to be not working on Friday, she was by my side instead of planning a vacation with her family.  We celebrated the wonderful, unexpected news with some lunch from the cafeteria, and I was discharged in time to pick up my son from school.  We had emailed his teacher the night before to inform her of the situation.  She replied before noon the next day telling us that my son had immediately told her about what was going on:  "My dad is in the hospital because the doctors want to give him some medicine.  I don't know when he'll be home."  As heartbreaking as that may sound, she said he relayed the information without seeming sad, and was having a great day.  Water off a duck's back. 

     I had tears in my eyes as I drove to his school, knowing he would be elated to see me, and even more happy that my surprisingly short stay meant that our weekend plan could proceed unchanged:  I would take him to the Red Wings game, his first, instead of his mom filling my shoes.  The hug I got when he saw me was great, but was later overshadowed by high fiving him as we jumped up and down screaming each time the Wings scored Saturday night. 

     As we prepared signs before the game and put on our gear, I almost couldn't believe that the roller coaster of the previous two days had led me to that point.  Even if someone had told me exactly how Thursday to Saturday of last week would play out, I still don't think I would have saw it coming.


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