Supraglottoplasty

December 3, 2014 – December 13, 2014

It was really nice being at home.  But every noisy breath was scary.  We tried to get back to normal….or a new normal because we would never be the same.  We put up the Christmas tree.  After a few more days at home, we went back to work and daycare.  I had been only at my new job for 2 weeks when Landrie went into the hospital and I had to take a week off.  Thankfully, my boss was very understanding and told me family comes first…you don’t hear that too much anymore in todays society.  

Over the weekend, I noticed a couple episodes of noisier than usual breathing but they did not last too long.  On December 9^th, one week after being discharged from the hospital (2 days being back to work and daycare), Landrie had an episode of concerning breathing that lasted a bit longer  and we got a call from the daycare.  My husband went to check on her but she seemed fine once he got there.  I decided that I was going to take her to childrens ER to have her checked out after work just to make sure she was ok.  After work, I picked her up and I started to cry in the hallway of the daycare center.  She was fine at that moment, but the stress of the last couple weeks had come crashing down on me.  The workers at the daycare were awesome.  We ate dinner and then I packed a few things just in case she was admitted.  My husband was leaving for a trip early the next morning and would be gone for a week.  So if she was admitted, he wouldn’t be around to bring me anything. 

 

They decided to admit her for observation due to respiratory distress.  I called my husband at 11pm at to let him know she was being admitted and he had to drive our son 45 minutes to my parents’ house at midnight.  After 24 hours of observation, the ENT said that her oxygen levels kept dipping so they were going to do surgery, Supraglottoplasty, the next day.  During this surgery, they would remove the extra floppy tissue.  Because they were adding her onto the schedule last minute, I had no idea when the surgery would be.  She wasn’t allowed to eat anything after midnight.  It was a very long and lonely day waiting for them to call us down.  They finally called her down late in the afternoon.  The hardest thing I have ever had to do was to hand my baby over to the doctors and walk away.  I cried the whole way to the waiting room.  The surgery went smoothly and in less than 2 hours I was in the recovery room with her….it was the longest 2 hours ever.   The ENT found that she had some other airway issues.  During the surgery, they did a bronchoscopy to take a look further down in her airway.  They found that she had mild tracheomalacia (TM), mild subglottic stenosis and there was an area of the trachea with a severe compression.  They believed this was caused by the Innominate Artery.  They were unable to pass the scope past this compression.  The next day they did a CT scan and confirmed it was Innominate Artery Compression (IAC).  They said that her trachea was about 90% compressed.  

Tracheomalacia (TM) is a floppy trachea (windpipe).  Subglottic Stenosis is a narrowing in the airway between the vocal cords and trachea.  Innominate Artery Compression is when the innominate artery that comes off the top of the aorta is compressing on the trachea. 

She had a few rough days of worsening breathing which is common due to swelling.  But she recovered well and we were able to come home on December 13, 2014 after 4 nights of being admitted.  Our plan was to see how she recovered from the surgery and evaluate if she would need surgery for the IAC.  I received a lot of information that I was not expecting.  It was a shock to find out there was something else going on and that it was something severe.  I had expected her to come out of surgery fixed and we could put all this scariness behind us.  But instead Airway Defects had delivered another unexpected punch.  And I realize that this is definitely not the end of the journey for us.