Well, I mentioned that Ella did not like both of her hands tied up. By midnight, her nose was bright red. We also noted that the coverings on both arms weren’t the best, so the nurse helped us wrap them in something softer.

We all had a restless night. We advocated for Ella to be given Tylenol twice during the night. Although she was not in any pain, her hands being tied up and an itchy feeling on her face was making her uncomfortable and restless.

She is still battling congestion. Unlike pre-surgery, it does not seem to be in her nose at all. Now, it all seems to be in her airway. So when she coughs, you would think she has a horrid case of bronchitis. These symptoms are most likely due to the bronchoscopy procedure that was performed yesterday.

Throughout the night, she would roll from side to side trying to get comfortable. Here and there, she would belt out a rounds of coughs. Most of the time, we give her water by mouth to help wash down the thick secretions. But we were on strict orders to not give anything by mouth. That is tough to endure when you can’t make it better for her.

And since she was on the narcotics via the epidural, literally the nurse was in our room every hour having to perform vitals, administer meds, check her breathing, etc. Unfortunately, it was not a restful night for any of us.

About 3:30 am, the nurse was in the room fixing one of her pumps and Ella started to cough. Instead of coughing and clearing her throat, it almost seemed like she inhaled the secretions. So very quickly, Ella became frightened because her airway was completely occluded and she could not breathe. Josh and I both heard the commotion and leaped up to assist. The nurse tried to suction but was unsuccessful. She called for help and within seconds, there were about 6 people in our room helping with Ella.

It required blow-by oxygen and forcing the mask on her face, against her will, to bring her back. She turned purple blue and was trying to breathe but couldn’t. When her eyes start to dart around with fear, you know this is beyond her comfort level too. On top of that, she hates masks and when you make her use one, it works her up even more. But her saturation went down to the low 60s, so they did not have a choice. Several hands were holding her down in place and forcing the mask around her mouth. Finally, with further suctioning and saline, they were able to move the secretions enough so she could breathe on her own again through the nasal cannulas.

All this activity at 3:30am was a lot for the exhausted parents. It reminded us of the episode that we had in the NICU back in November, when Ella was much sicker, right before she was re-intubated. It was that same scary feeling, watching your daughter look at you with this frightened scared response, pleading for your help because she can’t breath. And yet, it is something you do not have control over in the moment. Your daughter’s life is in the hands of the trained medical professionals and you hope that they are taking all the right measures to ensure her safety and well-being. Once the storm calms, you remember that God is sovereign and always in control, even in the scariest of moments.

The surgery team rounded at 6:30am, poking and prodding at Ella. It was one of the first moments of solid sleep for her….figures. Once I took a peek at her, I felt so sad. She had rubbed her face so much and so hard with her wrapped arms, that her nose, cheeks and eyes were bright red.

When the pain medication team stopped by, they noted that along with Ella’s frustration of trying to adjust her cannulas without her hands, it could likely be an “itchy” response from her pain medications (a fairly common side effect). It made sense to us since it seems like she was rubbing her face constantly, definitely more than normal. So this morning, they started her on Nalbuphine, which is a medicine that should help relieve the itchy feeling.

The good news is that both IVs in each hand are still viable. The one on her left hand has been there since last Saturday, which is rare for Ella. So of course, the time when we would want an IV to go bad because it would mean more comfort for Ella, it is holding on strong! They want to keep both IV access points over the next few days or as long as they will last. I’m really hoping that the itchy sensation goes away so she can get comfortable and get some much needed sleep.

When they examined her this morning, they are a bit concerned with her epidural site. It is oozing and there is a red area about 2 centimeters in diameter. They cleaned the site and re-bandaged, but are going to monitor closely. If it looks the same or worse this afternoon, they might remove it. The caudal epidural is the superior choice for pain management but they also do not want to risk any infection.

The surgery team gave the consent to start feedings today. The plan is to start with clear liquids, like Pedialite and slowly change back over to Alimentum. They anticipate that it will take 36 hours to have her back on full feeds of Alimentum.

She is on 2 liters and seems to be saturating well with a lower heart rate. I think the pain meds are keeping her nice and relaxed; hoping that epidural can lat a bit longer.

We had a chest xray this morning, so they can compare to pre-surgery. Hopefully, we can take a peek later. Her urine output seems good, but they will be drawing labs today too. We’re hoping that one of the IVs can be used, so she doesn’t require another poke. Finally, we expect to hear results from Ella’s echocardiogram from yesterday and whether or not we need to give any consideration to any different medications based on those results.

Please continue to pray for Ella’s comfort. Everything went really great for her surgery and bronchoscopy. We’re just having a bit of a challenge maintaining her comfort level post-surgery and that might become more challenging if they have to remove the epidural. And of course, it breaks my heart to see her itching her face constantly, making the red spots even worse.