Ainsley Got Her Tracheostomy

Happy Thanksgiving to you all.

Ainsley got her tracheostomy yesterday. This was great because otherwise she’d have been waiting around in the ICU for another week. It was fairly quick. She was in the OR for 1 ½ hours during which they also did another bronchoscopy and laryngoscopy (i.e. checked her out with a scope) to reevaluate her airway. We were able to stay with her into the night, which was really nice. Especially because we helped keep her happy by having her suck on our finger(s) for a few hours until they could start her feeds again. It took her awhile to figure it out because it feels so different without the tube in her mouth. It is so great to see her sweet little face. When they brought her back they connected the trach to the ventilator and gradually reduced the settings over the night. The great news is that she is now OFF THE VENT! Yea! She’s breathing room air, all on her own. There is a humidifier tube connected to the trach and my understanding is that this is a necessary part of having a trach that will continue until the trach is taken out. She’ll stay in the ICU for a week for recovery and to allow the stoma (hole) to heal. Then she’ll be moved to the floor (a regular hospital room) for care. We’ll receive training on how to care for a trach and the occupational therapists will start working with her on feeding. And, as I said in the last e-mail we’ll be waiting to get a home care nurse lined up before she’s released. We are nervous about caring for a trach but are excited to be moving toward getting Ainsley home.

The very encouraging thing is that the otolaryngologist, Dr. Chen, saw 2 polyps on the vocal cords, one on each, that press against each other in the middle and basically causing a substantial obstruction in the airway. (We’ve got a picture which you may be able to see in the future.) She has said that it looks to her as if Ainsley would be able to breathe if the polyps were gone. (Of course that’s not for sure.) The polyps were caused by the breathing tube (so that doesn’t explain the initial source of the problem). Dr. Chen wants to wait to see if they may go away on their own. She’ll look in a month to see if there is improvement. After 2 months if they aren’t gone she can remove them with laser surgery. They’d even considered removing them yesterday however anytime they perform surgery on the vocal cords there is risk of causing damage so they opted not to. They can also try GRADUALLY downsizing the trach tube and capping it off to test whether she can breathe without it because the inflammation and polyps are gone. So, that is encouraging.

We also met yesterday with an orthopedic doc to review her hip dysplasia. Unfortunately the pavlik harness didn’t help enough to be fully effective and one hip is still partially dislocated and the other is fully. The good news is that they removed the harness the bad news is that she will need a cast in a few months (not yet because the bones are more like cartilage until they are a bit older). Here’s a link if you want to know more about what this is. http://orthopedics.seattlechildrens.org/conditions_treated/developmental_dysplasia_of_the_hip_ddh.asp
Ainsley is still not as alert as she was before the surgery. She’ll probably need another day or two to recover before having visitors.

That’s about it and I’m off to the hospital now.