Surgery for Frances

Right after getting her breathing tube out in the PICU

The little hand is on 11. The big hand is on 12. It is 11 o' clock. It is check-up time for Frances.
Mother kisses her and hopes for the best. Father kisses her and prays for weight gain. Frances goes with Mother to see the doctor. Frances loses weight. Mother cries, the doctor cries, Frances is admitted to WakeMed. Frances thinks, "They will figure out what is wrong with my tummy so I can go home soon." Mother packs a bag. Father packs a bag. Mother and Father spend the night with Frances at the hospital.

It is morning on day three of being in the hospital. Frances is not feeling any better. The Pediatric ENT who released her at Rex comes to see her again. He announces that she has severe laryngomalacia. Mother is confused. Father is confused. They remember the same doctor telling them that her condition was not only mild but harmless.

Mr. ENT says he doesn't feel comfortable treating this "severe atypical form" of laryngomalacia. Mr. ENT says she will need surgery. Frances thinks, "W-T-F?!?!?" Mr. ENT suggests that Frances be transferred to NC Children's Hospital at UNC. Dr. WakeMed agrees. The transport team arrives with a heated aquarium looking thing to take Frances to UNC. Frances gets to ride in the giant transport ambulance. Mother and Father follow behind in their little red car. Frances is admitted to UNC Hospital.

It is the weekend. No testing or true treatments can be done until Monday when the teams return to work. Frances enjoys a weekend of throwing up her food and starting to be fed by an NG tube running down her nose.. which she throws up as well. Mother is tired. Father is tired. Frances is tired. The nurses and myriad of doctors and medical students at UNC are incredible. The doctor's say, "We don't call things "atypical" here. We see it all so this doesn't look unusual to us." Mother feels cared for. Father feels hopeful. Frances tries hard to get better on her own.


A super happy (naughty) girl who just pulled her NG feeding tube out for the second time

It is Monday. The teams are assembled. ENT and pulmonary doctors meet to discuss what is to be done to help Frances. They will do a scope in the OR on Wednesday so that if they think surgery is necessary they will only have to sedate her once. Mother is relieved to have a date to work towards. Father wishes it was sooner. Frances is asleep. Frances is so tired from trying to breathe that she sleeps around the clock unless she is more uncomfortable than usual. Frances can not keep any food down that she eats orally.. so she is giving a "continuous feed" via her NG tube.

It is Wednesday. It is surgery day. Mother carries Frances in her arms to the surgical area. Mother prays. Father prays. Frances sleeps. The nurses and doctors take Frances from Mother and walk away towards the OR. Mother and Father go to the waiting room. Soon the doctor comes out. Mother's heart jumps. Father turns red. The doctor gives them the diagnosis. It is as they expected, a severe case of laryngomalacia. They are proceeding with the surgical intervention (a superglotoplasty) and should be done soon. Mother thanks the doctor. Father thanks the doctor. Frances has surgery and is transferred to the pediatric intensive care unit (PICU) for further observation.

It is Friday. Frances has had her breathing tube removed and has been breathing on her own for 24 hours. She is doing very well. A speech therapist has already been to her room twice to feed her with a bottle to see if she could eat. Frances has had to learn how to breathe and swallow again with a little less tissue in her throat. Frances is a quick study. The ENTs say she is doing better than expected. The pulmonologists think she sounds wonderful. Frances is ready to go back to the pulmonary ward. Mother is thrilled. Father is ecstatic. Frances is waiting for a room to open up so she can continue her recovery up on the 5th floor. Frances thinks, "When will I be well enough to go back home to my house and see my big sisters?". Mother wonders the same thing. Father is going stir crazy in the PICU. The doctors make it sound like it won't possibly be before Monday.

To be continued....