Well, it has been a bit since our last update. Olivia is doing really wonderfully, we are happy to report. I’ll start with the biggest, most exciting update first – we have a decannulation date set! March 18th!
Olivia had a scheduled laryngoscopy back in October. It went well, and showed that she had no additional tracheal collapse since the last scope in November 2023. Her pulmonologists thought she was doing so well that they didn’t even feel the need to do a bronchoscopy! After the scope, the ORL doctor gave her approval for Olivia to do a capped sleep study – the last hurdle to determine if she could be decannulated.
The sleep study took place on January 3, where Olivia’s trach was capped and she was hooked up to about 20 different stickers all reading different body/brain systems. She was very very unhappy, and had a tough time with the setup. Thankfully, she ended up sleeping enough that the tech was able to get data for conclusive results. She couldn’t tell us the official results, but we were told Olivia did “very well.” A few days later, we received a phone call from the ORL surgeon that Olivia passed! The only thing of note was that Olivia appears to have mild sleep apnea – though nothing they are concerned about.
The ORL/pulmonology team decided that they want to do one last scope of Olivia’s trach, to make sure there is no additional tracheal collapse, before they will take out the trach. That date is scheduled for March 18! Once the scope is done, they will send Olivia upstairs to the ICU, and remove her trach. She will no longer be a trached baby!!!!!!!!!!!!
She’ll stay overnight so they can monitor her first night without a trach, and then she will come home with us, sans trach! We are so unbelievably excited for this day, and for everything it will mean for us. We surely haven’t grasped how much this is going to change our lives, but we can’t wait to find out.
In other news, Olivia had a great fall, happy birthday (she shared a party with Mama), and fun Christmas! She’s such a happy child, who just wants to dance and play all the time. She’s so smart and great at listening. Olivia likes to learn new signs, and is trying to say many words. Her babbles are still the cutest!
In the realm of feeding, we haven’t had much progress. Olivia has no interest in eating food orally, but will occasionally put something in her mouth and tap it on her teeth. We have a ways to go before she can get all of her nutrition orally, so the G-J tube will be here for a while longer. We hope that once the trach is removed, there will be less irritation in her throat that may be contributing to her gag reflex. There have still been almost daily vomits, so we are trying as a team to figure out why.
Olivia started attending play group at Early Intervention in October, which she loves. She is interacting with children her age, learning routines, and so much more. We are excited to continue introducing her to more toddler activities as she becomes healthier!
We are going to do our best to keep Olivia as healthy as possible the next two weeks, so that she will be ready for her scope! WE ARE SO EXCITED FOR MARCH 18TH!!!!!!!!!
P.S. There are too many wonderful images of this incredible girl, so even choosing this many to share was difficult!
