I wish we had a more positive update to share this morning. Yesterday around 3:30 PM, Olivia was reintubated. Since being extubated Tuesday morning, she had a number of good stretches and it was such a thrill for us both to see more of her face, to hear faint hints of a cry, and to be able to move her more freely. But ultimately – despite increased assistance via pressure support, rate, and oxygen levels, Olivia was unable to keep her lungs expanded and working well enough to remain without the assistance of the breathing tube. The whole 31-hour ordeal was extremely taxing on her. She experienced two collapsed lungs (first the right on Tuesday, then the left on Wednesday), it appears some alveoli may have burst, and her CO2 levels were sky high putting her back into an acidotic state. Because we, along with her team, wanted to try to give her a real shot at success, we pushed her through multiple attempts to recover on her own before making the decision that it was no longer in her best interest to remain extubated.
Similar to last time, the path to recovery from this trial will likely be a few days. In the hours after being reintubated, her CO2 levels remained high. However overnight she seems to have settled down and made herself comfy again. She’s bounced back considerably at this point but has a way to go.
We were both so excited to get the ok from pulmonology for another trial extubation, that we hadn’t realized how difficult the time would be on us as parents. Every minute she was without support from the breathing tube was stressful. Seeing her heart rate high, seeing her little head and body covered in sweats, seeing her visibly struggle was heartbreaking. There were times we questioned whether we had made the wrong decision to trial extubation again. Once as I watched her cry for a moment, I even turned to Luke and asked if what we were doing was cruel. It was so hard, but in our more rational moments we knew it was the right time, and it was right to give her time to try and work it out on her own. Prior to extubation she had shown us all of the right signs that she was ready to try, while extubated she showed us all of the right signs that she was trying as hard as she could, and eventually, she showed us this just wasn’t the right time.
To make sure we end on a high note, here’s a more positive moment, taken on Tuesday afternoon while she was comfortable and enjoying her new getup! Note: the “breathing sound” is the RAM machine, not her actual breaths.
Throughout the day today we’ll work to wean her ventilator settings (pressure and rate) back to a level that’s closer to where she was on Monday. We’ll also meet with Dr. M who is her attending through the end of the week to discuss the trial, get his perspective on what we learned, and understand where we go next. But in the meantime, today and the next few days will be focused on resting and recovery. The little girl is pooped, as are mom and dad.
Oh goodness Olivia. What a brave little one you are. Rest us sweet pea and we will see you soon. Nana💓
Love seeing her fingers wiggle…hi back to you Olivia! Love you guys and thinking of you. Feel better Olivia!
Can’t wait to see her tomorrow!
Sweet Olivia. We are praying for you to get stronger. You are precious. Keeping mom and dad in our prayers too. You are all so strong. Love you all.
Olivia you’ll be a big girl real soon! Your Mom & Dad are real brave, just like you❤️
I Love You, Grandma
Thinking of you, Olivia, and so proud of your hard work. Thinking of you Wink and Luke!
Olivia you continue to be so brave and so sweet at the same time. 💜💗 Your mom and dad are amazing and brave just like you. 🤗