Monday, July 30, 2018

Setback: P-Flap Failure

The pharyngeal flap ("p-flap") surgery that Henry underwent a couple of weeks ago apparently came undone, or "dehisced." The surgery had aimed to transfer muscle tissue from the back of his throat (pharynx) to his palate in order to narrow the opening to his nasal passages. Sutures meant to hold the tissue in place unraveled, and now his speech is even more hampered than before. 

As a result, the prospect of still more surgery this year was a surprise and disappointment.

It was heartbreaking to watch Henry process the news, particularly with some strangers including a medical resident and a first year medical student in the examination room at the time.  But he handled it well.  

It doesn't appear that simply redoing the p-flap is an option.  At any rate, we'll first have to let the tissue in the area heal for a minimum of about 6 weeks. This means Henry will soon start his 6th grade school year at a new school (middle school) with some serious speech issues much more pronounced than usual. Probably the quickest we could return to the hospital for a repair would be Thanksgiving break in November.

Monday, July 16, 2018

P-Flap Surgery

Henry’s series of Midface Distraction procedures successfully moved things forward to set his upper jaw more correctly in line with his lower one, but in doing so it created a new gap between his nasal and oral cavities that allowed air to pass between the two when he spoke. The result was a hypernasality that made his speech suddenly difficult to understand.

So we returned to the hospital last week for more surgery to correct this new problem. The fix was a procedure called pharyngeal flap surgery that is more commonly performed on younger patients in the event of similar speech problems after a general cleft palate repair. The “p-flap” procedure took just over two and half hours before Henry was wheeled into the post-op recovery room to be brought out of anesthesia. Once again he experienced trouble with nausea as he gradually awoke, and this seems to have established itself as a recovering problem.  After a couple of hours he was okay, and wheeled up to a regular room upstairs where we stayed until we were released to go home the next afternoon.

Henry slept through the nearly entire first day, probably due from a combination of effects from pain medication and a secondary medication aimed at reducing nausea that was introduced into his IV fluids. Once he became alert later that night we quickly started him on a steady diet of crushed popsicles and just plain crushed ice that he could keep close by in a small Styrofoam cup. This quelled a lot of the swelling around his stitched area, which was pretty far back in his throat.

By the next morning, he was dutifully performing all the requisite tasks needed for release—drinking fluids, accepting liquid oral pain meds, walking gingerly with assistance over to sit on a small couch by the window in his room. By late afternoon on the second day, we were cleared to go home.

It is several days later now and Henry is still recovering, although definitely on the mend. We’ll return for a check-up in a couple of weeks to get a full read on whether the surgery was a success. For now at least we can tell that Henry’s speech doesn’t seem to be any worse as a result and he hasn’t begun to snore during his sleep, which would be an adverse sign. Basically, he came through like a hero once more and is just happy to be returned home with a few more weeks of summer left before starting middle school.

Thursday, April 26, 2018

Our Hero


Each spring, public and private schools in New Orleans and its surrounding Louisiana parishes nominate one student from their school to receive an inspirational hero award given by a private sponsor.  The heroes are children who have made “overwhelming achievements despite physical, emotional, psychological, or social challenges faced on a daily basis.”  

This year principals and teachers from our local school nominated Henry.

He sure has been our hero.  Henry often makes surmounting obstacles look easy when we know they can be very hard.   His resilience truly has been inspiring.

Henry goes to the Lusher Charter School.  We are very grateful for the kind understanding and support we've found there.