Journal entry by Deborah Lewis

Greetings All:
I have a short story and a long story.

THE SHORT STORY:  Steve is back in the hospital as of Sunday.  Because he is showing that food and liquid aspiration is a problem that is affecting his new lungs, he has had a feeding tube inserted in his abdomen.  He will have the feeding tube in for at least four months until they can figure out next steps that may involve additional surgery to correct his problem.  If surgery is recommended, then it can be done at about three months, we're told.  He should be discharged Thursday.

THE LONG STORY:  No one said that this would be easy.  Steve was admitted back in the hospital on Sunday morning after a great Saturday but rough Sunday start.  He has long had problems with aspiration -- food and liquids going down the wrong pipe, and in the past, Steve went to a speech therapist to learn ways to deal with food/liquids so that he wouldn't aspirate.  One of the tools is good coughing to expel stuff from the windpipe.  Anyway, on Sunday, one of his pills got stuck in his windpipe and after lots of coughing it came up along with some colorful phlegm.  (I hope this isn't too much information.  I'm trying to be thorough enough, though, so you don't have to scratch your head wondering what's going on.)  The backstory on his aspiration problems is that 20 years ago Steve had surgery on his cervical spine that involved a plate and screws.  The surgery was performed by going through the front of his neck.  One of the screws eventually backed out and presses on his esophagus, and Steve's experience is that what he's trying to consume gets hung up there.  After this episode with the pill, Steve got despondent and unresponsive to my questions about how he's doing.  He seemed confused enough that I decided to call his coordinator about the coughing, phlegm and despondency/confusion.  She told me to take him to ER.

Once at the hospital, Steve showed additional signs of confusion to the doctor team that came to check him out.  He couldn't answer questions or follow easy commands.  He used nonsensical "word salads" to answer -- real words that were strung together to make zero sense.  So, they thought that maybe he was having a stroke or seizure.  (Never mind the aspiration and phlegm part yet).  He had a CAT scan and MRI and then they hooked him up to a 24-hour EEG and moved him to a regular room in the hospital.

In the end, after analyzing the data, the neuro team determined that he had not had a stroke.  The results are inconclusive but they offered three possibilities.  One is that he had a mild seizure.  They found a tiny abnormality on the MRI in the speech part of the brain.  The tiny spot isn't something that they would normally have any concerns about.  It may just be a coincidence.  But to be safe, they're giving us a medication so that if the symptoms come back, he can take this under his tongue to bring him back to normal while we get him to the hospital to treat for long term, anti-seizure maintenance.  The second possibility is that he aspirated a pill or pills that actually cut circulation to the brain and eventually caused these symptoms.  The third possibility is called "metabolic encephalopathy" and means that he had a probable reaction to his new medications.  Now, three days after that episode, Steve's best description of how it all seemed from his angle was that he, "...was experiencing a half awake dream."  Steve also thinks that the anxiety and stress he felt about the transplant on top of his aspiration was a big part of the problem.  End of that story, for now.  Next is this aspiration problem.

On Monday a team from speech therapy came in to conduct a different swallow test than others that Steve has had in the past.  (It does make me wonder why they had not ever done this test since he has had swallow tests in Utah and here in Arizona, AND this test was so illuminating and non-invasive).  A camera and flexible tube was sent down Steve's nose (local anesthetic only) and the camera slid up and down the throat area to check out his swallow action while he consumed crackers, apple sauce and milk all dyed bright blue with food coloring so that we could watch the TV screen and follow the food/liquid.  He took sips, gulps, and said "AWW" and other swallowing styles to see how everything functioned.  It was fascinating.  In the end, it was shown that the flap (epiglottis) that closes and seals off the windpipe when we swallow was not able to create a tight seal because of (you guessed it) the screw in his neck prevents a tight seal and allows seepage into the windpipe.  Normally coughing can expel most if not all of the seepage.  But, in Steve's case there was also one small area where a tiny bit of liquid pooled and should have elicited a cough reflex but didn't.  

The speech team in consultation with the transplant team decided he had to have the feeding tube.  His new lungs are getting stressed because of the aspiration.  (No mystery here.  Steve has long held that he was still aspirating despite therapies and that it contributed to the swift decline of his former lungs.)  When consulting with one of the transplant doctors at St. Joseph's back in February of this year, he told us that because of possible aspiration problems, Steve might have to have a feeding tube.  But, Steve passed all the swallow testing enough to not sound any warning bells -- at least until this new test was performed on Monday.  

He will have the feeding tube in for at least four months until they can figure out next steps that may involve additional surgery to correct his problem.  If surgery is recommended, then it can be done at about three months, we're told.  Sometime in the next month or two we will probably see a neuro and/or orthopedic surgeon about fixing the screw problem.  He should be discharged Thursday.

As all of this aspiration drama was unfolding, I had a vision.  I visualized Steve's new lungs as a white, fluffy little lamb that just got placed into a lions den.  I love lions, especially this host "lion," but lions and lambs don't usually play well together and it's our job/Steve's job to help the lion and lamb lay down together peacefully.  We want the lamb to grow and thrive.

Love and Gratitude,
Deb

P.S.  Now we hope that the only drama today is the JAZZ beating the OKC THUNDER in game 5 in OKC.  Also (not to make light of this but)...Hey...Now I don't have to ask him what he wants for dinner.  I'm on my own!

P.P.S.  I realize that I said nothing about how Steve is feeling mentally and physically and that's because he is doing so incredibly well in both arenas that it's just not top-of-mind.  His pain is well-managed and minimal.  The new incision for the feeding tube is sore...to be expected.  Mentally, he is now passing all of his cognitive tests 100% and he's sleeping well enough at about six hours a night.  He is in good spirits...joking with staff...getting back to his mile plus rounds on the 7th floor and so on.  Our kids (including nephew Matt) have been calling daily along with granddaughter Ella Jo, which are high points in his day.  He is also repeating over and over to me and to hospital staff that he is looking forward "...to the best times of my life."  I'm on board with that! :)
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