Ella had a rough day.

Her ET tube got clogged with a mucus plug. They tried to suction it out, but they were not successful. In the meantime, Ella was having a tough time breathing and got scared. She turned her bluish/purple color and got very upset. Once she gets this upset, it is tough to console her.

They opted to extubate her since they were not able to clear her airway. From there, they placed her on CPAP. But she was so annoyed, the CPAP was not helping her much. Then, they gave her versed (sedation) to try and calm her down. That was not effective either. Next, they placed an oxygen mask over her mouth to help her. She seemed to respond to that treatment the best, but they can’t stand over her and hold it. So, they opted to try a high flow nose cannula. Initially her stats were not doing well, so they increased the cannula to the highest amount of oxygen. This seemed to improve her stats and get her to a place where she could calm down.

They took a blood gas and it was in the acceptable range, so they left her on the nose cannula and were intending to simply monitor her clinical signs and go from there. Unfortunately, Ella had a nurse that was not familiar with her. This just made the situation more stressful for Ella and the nurse.

By the time I was able to visit in the evening, she was still on the nose cannula. The nurse and respiratory therapist were noting that this was the best she looked all day. But as soon as I saw her, she did not look great. She had a difficult day, but right in that moment, her breathing was labored. Her saturations were low to mid 90s. She was having a tough time – – more than normal for Ella.

My intuition told me that this was too big of a step for her. Immediately, I asked what the plan was for her care. I was told that they were intending to leave her on the nose cannulas and just monitor her. To me, it was obvious that this was not the right thing for Ella.

I asked to speak to Dr. Kays. If in fact they were going to continue down this path, I wanted my concerns voiced to him and/or I wanted a better explanation as to why this was the right choice for Ella.

Dr. Kays had already left the hospital for the day, but he called in. After talking with the nurse practitioner on staff, she came back and stated that sedation was not the answer and the plan was to place her back on CPAP. This felt like the right decision.

The nurse and respiratory therapist were so hesitant to place her back on CPAP because of her negative reaction earlier in the day. But I could just tell that Ella still needed the pressure to keep her lungs expanded.

Since I knew this was going to be tough for Ella and not something that she would like, I suggested that they let me hold her and then switch her to CPAP. This way, I could place her binky in her mouth and try my best to console her with the change (she has missed her binky over the past week).

Thank the Lord – – it went off without a hitch. She made a sad expression, but was over it in about 2 seconds. She let me hold her and began working away on the binky. From there, her saturations increased and stayed pegged at 100. CPAP is exactly what she needed.

I was able to hold her for about 30 minutes and then it was time for shift change, so I had to put her back in her bed. Fortunately, she seemed to stay in a good mood and I stood by her bedside until I couldn’t any longer.

Some other good news for Ella: her Grandma decided to make a last minute trip out to Gainesville! So during shift change, I went to go pick up Grandma, so that we could go back and visit Ella.

When we arrived, I offered to let Grandma hold Ella. This was her first time holding Ella. The last time that she saw Ella was only a short time after her repair surgery in late August, toward the beginning of Ella’s fluid issues. So, Ella looks a lot different!

Once they settled, Grandma didn’t move for 1.5 hours. Her and Ella seemed content to stay put. At this point, it was obvious that Ella was doing much better. She was interactive and looked comfortable. Thus, it was a difficult day with a good ending.

We are unsure of the next steps other than watching her lungs carefully and monitoring her. There is a good chance that she may need to be re-intubated if she continues on CPAP for a while. As we learned last time, her nares can get so swollen that the CPAP is no longer effective in providing pressure and places Ella in a position where she cannot breathe. We are going to try and avoid that scenario and try our best to be proactive. I’m finding it more important than ever to be a vocal advocate for our baby girl.

Par did well today and I did not get an update on Jonathan, but can peek over and see that he is still on ECMO. Grandma Kathleen is hanging on and fighting for her life.

Please continue to pray for Ella’s strength in her lungs as well as the needs of Ella’s roommates. Finally, please lift up Ella’s Great Grandma and ask that the Lord would heal her body.

We thank you for your support and continued prayers. It means so much during this time.