Apr 10-11 General Update

Olivia had her final day of recovery for her tracheostomy on Monday. The Otorhinolaryngology (ORL team – they performed the tracheostomy) has been monitoring her recovery closely and are pleased with her progress. She does have an infection at the surgery site that is clearing up nicely since she’s been on an antibiotic. Olivia has been taken off the paralytic and she is slowly waking up, though still heavily sedated. She is very puffy from being immobilized through this period, but the swelling should be coming down over the next few days. We can’t wait to see her face when it’s normal-sized, but right now she is a total potato. Finally, her arms are allowed to be free, and she can grab whatever she wants! Yes, even the trach tube is safe, since it is so well secured.

Mom and Dad spent a lot of quality time with her over the course of Monday and Tuesday, and greatly enjoyed seeing her whole face for the first time. Yesterday was the first time in Olivia’s life that both of her parents were able to hold her on the same day. And, Mom and Dad learned to pick her up and put her back into bed on their own! Her isolette has been removed, and a new crib has replaced it. This leaves lots of room for fun things like a mobile, music boxes, and toys.

Max and Becky are going to start learning how to care for Olivia’s specialized needs. So far, they have practiced suctioning her trach tube, but will learn about changing the trach itself in the coming weeks. They are so happy to be able to be more involved with her care. 

Over the next few days, Olivia will have her IV sedation converted to oral medications, which will allow for her PICC line to be removed. It will be such a huge relief once that is gone, since there are 4-5 lines running from various pumps into the PICC line. She will be much easier to maneuver once that is removed. Olivia still needs another procedure to insert her G-tube, and the team is discussing how best to proceed with that surgery. At the very least, Olivia’s vent settings will need to come down some, which may take a while.

Olivia really is a different girl with the trach. She can be much more awake and is visibly less irritated. As her sedation is weaned in the coming weeks, we will start to gradually see more and more of her personality. For the first time in this journey, we’re entering a phase we are truly excited about. Hopefully, it will be the first of many happy chapters in Olivia’s life.