Ella had a bit of a rough day again.
When she was sleeping, she appeared to be fine. Her blood gases and saturations were in the acceptable range. But in between, she had a few episodes.
All the normal things to calm her: suctioning, changing her diaper, switching positions, placing your hands on her head and feet, talking/singing to her…none of these were good enough. She would get so upset that her skin turned a deep red/purple color.
In those moments, I think she is scared. She is having a tough time breathing and she gets upset. When she gets upset, she creates more secretions in her airway which make it even tougher to breathe. From there, it spirals and the situation gets worse. At that point, the ventilator can’t do its job either.
Emotionally, it is tough to watch her struggle and feel so lousy. You want to take it all away and make it better for her…and you can’t.
Dr. Kays came into the hospital to take care of another baby and stopped by to see her. Her chest tubes only let out 3ccs for the day, so he feels like the fluid issue is resolved (otherwise we would see more coming out). But now, we have a different problem and he is not sure what it is.
His best theory is that this is a delayed response to something that was stirred up from the surgery on Wednesday. Although not much was done, that is the only variable that has changed dramatically for Ella.
He feels confident that she can get through this challenge, but we need to keep her stable. At this point, if she turns the wrong direction, she is at a high risk to go south fast and it may be tough to get her to turn around.
With this new challenge, Ella has taken several steps back in her progress. There were times today where they had to sedate her and turn up the oscillating ventilator to 100% oxygen, just to calm her down. If you remember a couple of weeks ago, Ella was maintaining well with 35% oxygen on a standard ventilator.
You can just tell that she is having a tough time breathing. Dr. Kays and I were at Ella’s bedside and he was looking at her, thinking and pondering about what could be happening.
I have been praying that God would give Dr. Kays the wisdom to know the next best steps.
I felt prompted to ask him about Ella’s scar. A few days ago, her scar was clear – – you almost couldn’t see it. It was healing so well. Now, her scar looks pronounced and bright pink. All of a sudden, he said, “systemic inflammatory reaction”. He walked away slowly to the nurse’s station, exchanged a few words with Dr. Saxonhouse, and sat in the chair pondering a bit more.
Then, he stood up with a confidence and walked over, “It’s time”. We knew that he was referring to steroids. They can take 24 hours to begin showing a positive effect. Then, he went through and explained about how he has been debating about giving her steroids the past day or so. When I asked him about the scar, something in him triggered and it makes him feel like now is the right time.
Although there are risks, the steroids will help her body fight off the inflammation. Immediately, Josh and I felt such a peace about this next step. We know that something is not right with Ella. And this time, it feels different than the other challenges we have faced. It is an infection or something outside of the standard set of issues that CDH babies are known to encounter. We sense that if we wait too long it might make things worse for Ella.
And through all of this, she is such a strong baby girl. You can sense her sweet spirit and her willingness to keep fighting.
During our visit, she woke up and looked around for 5-10 minutes and remained calm. This was not something we had seen from her the past couple of days. It was her way of letting us know that she is still holding on, despite the numbers.
Thank you for your prayers. He hears all of them and collects each tear. Ella is drawing all of us closer to our Creator.
