3rd Treatment at ACH and Decannulation

On Friday, January 16, 2015, Atticus had his third bleomycin treatment at Arkansas Children’s Hospital.  We flew out to Little Rock on January 14th and Atticus had an appointment at the Vascular Anomalies Center of Excellence on the 15th.  At that appointment, we discussed the long anticipated event of decannulation with the amazing, and always reassuring, Dr. Richter.  From that appointment, Atticus was admitted to the hospital and would have his first sleep study that night – meaning he would sleep with a cap covering his trach for the first time.  The cap cuts off airflow through the trach tube and allows for normal breathing through the nose and mouth.  Atticus’s trach had been capped during the day since July, but only during waking hours, and never while he was asleep.

Atticus did amazingly well on Thursday night and his oxygen levels stayed above 90 the entire night even with the cap (his levels were actually around 97 most of the night), but as things never go completely smooth, he woke up to a pretty bad coughing fit on Friday morning, and since he was scheduled for surgery at 8:30 am, we could not give him anything to drink that morning to ease the cough.  Surgery (bleomycin injections and laser) went as planned that morning, but Dr. Richter decided to do one more night of sleeping with the trach capped and ordered a chest X-ray just to make sure that nothing was developing with that cough.  This was also a really good test because Atticus’s tongue is always pretty swollen post-surgery, so sleeping with the cap and a swollen tongue would be a very good test in determining if decannulation was a good idea.

Surgery took about 45 minutes, to do the bleomycin injections (all in tongue this time), laser (on tongue and lip), and a scope to check out his airway (which looked great).  Atticus is always a little whiny (from the pain) afterwards but he generally wakes up from anesthesia pretty easily.  He spent a little time in recovery and was then moved back to his hospital room.  Around 1:30 pm we decided to put the cap back on, as most of the effects of anesthesia had worn off by then.  He did very well with the cap that afternoon, evening, and overnight…so decannulation was a go!

Around 9:00 am the following morning (Saturday) one of Dr. Richter’s residents came in and removed Atticus’s trach!  For the first time in over two years, Atticus did not have a tube down his throat and I could see his beautiful neck!  The transition was easier than I thought it would be.  He never pulled at his neck wondering where the trach was, and once we switched over to band-aids to cover the stoma (instead of gauze and medical tape), he left that alone too.

Two more nights in the hospital for monitoring and we were discharged on Monday, January 19th, and on our way back to Raleigh with a new member of the ‘naked neck club’!

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