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.

This morning, the team removed Olivia’s ET tube, a process referred to as extubation.

The last time extubation was trialled, Olivia was only 5 days old and we knew so much less about her capabilities and challenges. This time, we are far more hopeful that she’ll have the strength and endurance necessary to remain unintubated, although only time will tell.

This morning’s procedure was fairly simple and only took a few minutes. Her tube was replaced with a RAM Cannula, which provides her both pressure support and rate via her nose. Since this goes into her nostrils (vs. directly into her trachea or lungs), the support is not as direct as she’s used to. Instead of all going into her lungs, now some escapes through her mouth, and some also makes its way into her stomach. She’s likely to be on higher O2 settings (30-40%) for awhile, as she gets used to this whole life without a tube thing, and her team may continue to play with her settings for pressure support. Ultimately, we’d hope to remove the RAM, however, for a few days we’re giving her all the support she needs. Dr. M has ordered that only he (or the night attending, Dr. R) can give the authority to re-intubate her. He wants to try everything possible to give her a shot at success.

Timeline:

• 7:00 AM – Our nurse, arrives and turns off her feeds.
• 8:00 AM – Mom and Dad arrive. Olivia is awake. Mom combs her hair.
• 8:30 AM – Respiratory team & the docs begin preparations.
• 8:35 AM – The tube is out! We can hear her trying to cry.
• 8:38 AM – Dr. M gives the OK, the procedure is over.
• 11:05 AM – NG tube back in.
• 12:00 PM – Blood gas drawn
• 12:10 PM – Support increase (rate and pressure).
• 12:15 PM – x-ray reveals collapsed right lung.
• 12:50 PM – Restarted feeds
• 2:15 PM – Blood gas drawn

The pictures above are from immediately after the tube was removed. She became quite agitated and struggled for 3+ hours after extubation, but we were told this is somewhat expected, and that we should be prepared to see that type of response for a few days – she’s had the tube in for 45 days, after all.

A blood gas was drawn at 12pm (3 hours after extubation), and unfortunately it was very high (82). The team was concerned about her lungs, and an x-ray revealed a partial collapse of her right lung. Pressure support and rate were both increased significantly to help her re-recruit that lung.

Following the setting adjustments and some repositioning, Olivia settled down and slept much more comfortably for the afternoon. While we haven’t seen a follow up x-ray, a second blood gas at 2:15 pm was much better (64) and just at the upper bound of her normal range.

From here on out, we wait and see. Mom and Dad are excited but nervous. The day was rather stressful (much moreso than anticipated) and it’s likely to stay that way for awhile as we see how she responds to this major transition.

In the meantime, we look forward to when she’s awake and mad, as we can hear the faintest hints of her crying, which, for now, we love.