What does it mean? Tonsils are the two round lumps in the back of the throat. Adenoids are high in the throat behind the nose and the roof of the mouth (soft palate) and are not visible through the mouth or nose without special instruments.
Haven's surgery has been scheduled for March 10th. She will have her Tonsils and Adenoids removed, she will have a Bronchoscopy done, and she will have her ears suctioned out. Normally this is an outpatient procedure but because Haven is a rare and unique person she will 99% positive stay overnight for observation and respiratory monitoring. She also does not do well with anesthesia - none of the ROHHAD child do.
They also say there is generally a 2 week recovery period for "normal" people…..Haven does not have an immune system to aid in recovery so we're not exactly sure what her recovery period will be from this surgery. She will be kept in a clean environment and we've already ordered some masks that are cooler than the hospital ones for her to wear. It normally takes her about 30 days to recover from a mosquito bite…..so this will be a new one for us.
Grandma will be flying out from Virginia to stay with her and pretty much be her nurse during this time. Which is great because I will be flying back out to Asia and Bangladesh. It's very hard having a child with a rare illness and no family nearby but it's very nice to know Grandma will fly out every 6 weeks and stay for a few weeks at a time! LOVE YA GRANDMA!!!!
On May 3 Haven will have a repeat sleep study to see how her C-pap is working after surgery. Her pulmonary doctor wants her to have a full two months recovery from surgery before making any evaluations on her. We agree.