another reconstruction...

hcs_mom · #1 04-29-2010, 02:41 PM

Hannah's breathing was off last week, so I called ENT. We saw her ENT this morning. We talked for at least 45 minutes. Those poor people with appts after us...plus we had been added onto an already booked schedule.

Anyway, she has been sizing at 5.0mm for about 2 years now. There is still collapse, narrowing, and now that right vocal cord that is not really functioning.

At some point, she will need another reconstruction. I imagine sooner rather than later, but not necessarily this summer or anything. Unless she cannot handle illness, then it puts it into that emergent category.

We are looking at more grafting, some work on the larynx itself, and either a vocal cord lateralization or cordectomy. He will do everything at once since Hannah does not tolerate anesthesia or intubation well. She would be intubated at least 7 days with the hopes of extubating by day 14. And she would have to be snowed. So all of the withdrawal issues.

He said that 20-25% of reconstructs needs these laser tweakings for about 4-6 mos post reconstruction. Only about 1% of kids need additional reconstructions AFTER decannulation.

There is also the lung issue that no one can figure out. However, if her pulm feels that this additional oxygen need is due to airway issues, it may push us to reconstruct sooner rather than later.

So, short term she's "OK"...whew. But long term...there is work that will need to be done.