Ainsley Will Need Need Tracheotomy Surgery

Sadly, Ainsley still had significant difficulty breathing today after being extubated. She breathed on her own without the tube for about an hour but it was obviously really hard for her. So she is going to need a tracheotomy. They did not have any openings on the surgical schedule this week but will try to squeeze it in at the last minute if possible. Otherwise she will be scheduled for a tracheotomy early next week.

After the extubation we had a conference with a team of 7 doctors and social workers to discuss her various conditions. Most of the information was not new. The one thing we did learn that was hard to hear is that they expect her to remain at Children’s for another 6-8 weeks if things go well, longer if not. This is because the tracheotomy is a week away, there will be a week in the ICU for recovery and then they will need to train us on how to care for her (it’s pretty involved). They also have to assess her ability to feed and start feedings. And, most importantly they need to have a home care nurse available to come relieve us at home while we sleep and there is a shortage of home care nurses. This would probably be temporary but is important initially for Ainsley’s safety and our peace of mind.

We just got home, ate and now I have to go to a meeting. We want to be able to talk with you each personally and will try to call you in the next day or so.