We just received a phone call saying they are closing up her neck now. We had three updates total and all were calm and standard. (Of course, as a parent, there is nothing typical about waiting 4 hours in a children’s hospital waiting for your name to be called to get an update like “we’re harvesting the rib graft” or “we’re placing the stent” or “we’re closing her neck.” Sometimes it is so impersonal it feels like the person is a builder of a home or inanimate object not that the subject is a 3 year-old little girl, my little girl!).
We should be with her within the hour.
The LTP or LTR (laryngotracheaplasty or reconstruction) begins. We expect it to take 4 hours. At the end, the trach will be replaced as we wait for the surgery site to heal.
Margaret went in the OR at 7:45. She was very calm and knows what she has to do. I told her she won’t be able to talk when she comes out and that we will use her signs to communicate. She nodded. I asked her to tell mommy and daddy “I love you” so we could hear her sweet voice one last time. It can take months to come back with these laryngealtrachealplasty surgeries.
“I love you Mommy. I love you Daddy.”
Such a brave girl.
They will update us every 2 hours or so.
We have the day off for “vacation” spending it at Cincinnati museum center. We are trying to give Margaret some good memories and play before a week of hospitalization. With the stent in she can’t talk or eat so it will make her mad.
7:30am surgery minimum of 5 hrs.
Incision in abdomen to harvest two rib cartilage.
Horizontal incision across neck for reconstruction.
Stent placed below and through vocal cord making speaking impossible during stent placement up to month after. Stitches to repair a cleft from intubation tube leaving a groove. This helps hold stent in so not spring out!
Rib wound most painful while stent in throat most functionally limiting.
Hospitalized on airway unit not ICU for a week, fed through tube in nose until swallow. Follow ups will be on Wednesdays for two weeks afterward then monthly.
Scar across neck put in a natural fold so I guess there is an advantage after all to multiple chins.