Just needs time...

    Today on the last day of May, we both can't help but reflect back on the previous month and all that it encompassed.   Talking with John one day about how 16 days in the hospital felt like an eternity, he made the correlation that the Olympic games are 16 days long.  We may not have run a marathon, dipped in a pool, skied down a mountainside or put on a pair of ice skates but instead competed and survived one of the most physically and emotionally difficult experiences of our life.


     Today we had an appointment today with Dr Smith (his ENT) and Dr Elstad (A Pulmonologist) as well as another familiar face from the hospital, ENT resident Ian.  The stoma (opening in his throat) is healing pretty well, they did a little bit to help it along with some silver nitrate.  Eventually it will heal along all the edges, but for now it's still open and working to heal.  

     They did a bronchsocopy and looked up and down.  I'm pretty sure he would be happy to never have one of those again.  The horrible tasting numbing agent and feeling of a camera in your nose/throat is in no way pleasant, but it's likely something he'll have to endure many more times in the future.  They estimate that at the point of the stenosis, his airway is currently approximately 70-80% blocked.   That is after the initial surgery on the 9th that opened it up.  The less than 5 mm opening that it was at the time of surgery would in my guess mean that he was 95%+ closed.  I'm so grateful that we followed the prompting to go to the ER and not wait until our original appointment with Dr Smith which would have originally been a week from today.

     From being intubated multiple times and for several days, and adapting to the trach, his trachea is irritated.  Before they do anything more to repair the stenosis, his body needs time to recover.  Time receiving oxygen without working so dang hard for it.   For now focusing on learning how to breath through a hole in his throat instead of through his mouth and nose as he has for his entire life.   He's been able to speak a little, but it's exhausting and takes a lot of focus.  With the trach he can only talk while breathing out and makes me appreciate how easy I'm able to speak.

      They planned several visits with other doctors to help him recover from his stay in the hospital and want to follow up with us again in about a month.  At that point they will again access and determine what the next step will be and how to control the stenosis.  They still are unsure of why the stenosis is so different than usual but do think it was caused by his two surgeries in 2015.

  The numbness in his tongue that has messed up his sense of taste is improving and should continue to improve.   The weakness in his arms (likely from being strapped down to the bed for almost a week) will be something that we also continue to work on.  The numerous bruises and other scars are also healing.  Given all the trauma of the past few weeks, he's doing pretty well and just needs time.
     
     We like everyone do not know what the future holds, but for now we'll just enjoy it.  One day at a time!