Unfortunately, Ella is about the same.

Last night while she was sleeping, we were able to adjust her down to 1 liter of oxygen. Her heart rate was mostly between 125-135 which is manageable (still higher than normal).

Once she was awake, the 1 liter of oxygen was not enough. Within 30 minutes, her saturation went down to low 90s and her heart rate was up around 185. This is way too high and basically the same as yesterday.

When I spoke to Dr. Perry, I explained what was going on and he could hear the alarm from her pulse oximeter going off in the background. He noted that she might need more oxygen while she is awake and to go ahead and keep her comfortable, especially if the extra oxygen would help her heart rate to decline.

I tried 1.5 liters but it did not seem to make a difference. Once I switched her to 2 liters and waited, her saturation was 99-100% and her heart rate when resting went down to 150ish. This is more manageable.

Dr. Perry thinks that although her condition has persisted, we should sit tight and give her the O2 she requires to keep her comfortable. If she becomes fussy or exhibits other signs of distress or requires more oxygen than 2 liters, he wants us to call back. Otherwise, we will just plan to go to the pulmonology clinic at our normal scheduled appointment next Thursday at 3pm.

So even though Ella is “dry”, she did retch a few times today. Also, she still is requiring more oxygen even though she does not have pulmonary edema. The steroids made a huge difference for her last week. And somehow over the past 2 months, things are different for Ella. She seemed to be stable 24/7 on way less oxygen; not different amounts of oxygen at night versus the daytime. We were also at sea level. She was not retching post NICU in Florida the way she has since we have been home in Denver, but she also got more “wet”.

I may have mentioned last week that they want to do a bronchoscopy. Since Ella would need to go under general anesthesia, they want to do this procedure at the same time as her hiatal hernia surgery. Bronchoscopy is a procedure that allows the pulmonologist to look at the airway through a thin viewing instrument called a bronchoscope. During a bronchoscopy, they will examine Ella’s throat, larynx, trachea, and lower airways.

The pulmonologist last week mentioned that when they did the swallow study, that Ella’s epiglottis does not function properly to help avoid aspiration. Your body has one other built-in feature to help avoid aspiration and that is the muscles around your vocal cords. From her clinical signs, they think that Ella might have weak muscles around her vocal cords too, likely from being intubated for so long. This could explain difficulty swallowing, working harder to breathe (if the muscles are floppy and don’t contract properly, it blocks the airway), retching, etc. Also, it might mean that Ella could be micro-aspirating or is at greater risk to aspirate. So, they have not given us the thumbs up to move forward with any oral feeding until this test is complete.

This is another reason we are anxious for Dr. Kays opinion, so that we can figure out when to schedule the bronchoscopy and hiatal hernia surgery. Without these procedures completed, we cannot move forward with any feeding therapies.

It’s just hard to sit each day and wait for an entire week. We know something isn’t right because she is not really stable unless she is on 2 liters of oxygen when she is awake and 1 liter when she is asleep.

Please pray for the Bun and her comfort. Also, that her respiratory status would improve in the coming days. Finally, that we will be given wisdom on the right procedures for Ella and these latest medical challenges.

Nahum 1:7
The LORD is good,
a refuge in times of trouble.
He cares for those who trust in him.