Ella’s morning was eventful with the figuring out the itchy response to the narcotics plus checking out her caudal epidural site.

The good news is that the caudal epidural site swelling went down as the day progressed. There is still some redness that they wish was not present, but cleaning the dressings and changing everything along with reducing the flow to 3.5ml per hour seemed to do the trick. So for now, they have opted to leave the caudal epidural in her lower back.

The second dose of Nalbuphine, to help with the itchy reaction to the narcotics, did not come soon enough. They can dose her with the med every 3 hours. The nurse let it go too long and Ella became really fussy.

At first, I thought that was the answer. Just give her the next dose of Nalbuphine. Once she received the second dose via IV, she was still having a tough afternoon. She was behaving like she does when she doesn’t feel well and is fluid overloaded.

I expressed to the nurse that something wasn’t right with her. I did not sense that she was in any pain, however, I do think that she is experiencing some type of discomfort. As I watched her, she wasn’t trying to scratch her face so that idea was eliminated. Still coughing and with more congestion in her nose, I could just tell that she was feeling crummy.

I asked about her labs. What did those look like from this morning? Her BUN was down to 16. Yep, fluid overload from surgery. Can you imagine the distress she would be having if we had not dried her out ahead of time? Also, we missed giving her the 9am dose of Bumex this morning. Because Bumex is given via g-tube into her belly and they had not yet introduced fluids into her system yet, they wanted to wait and give the 9am meds slowly throughout the day.

Once I asked about the labs, they also shared that her electrolytes, specifically her potassium and sodium were out of whack. After back and forth discussion, we resolved to skip the Bumex dose from this morning. Instead, we opted to get back on schedule for this evening with her diuretics and draw labs tomorrow.

Speaking of drawing labs, it was the hope that we might be able to draw labs from one of her IV lines, specifically the larger one that the surgical team inserted yesterday. No such luck, so the Bun had to get poked for her labs today and will need to on a daily basis. Sigh…

Back to a fluid overloaded Bun…she also had a chest xray this morning. I asked how that looked. They informed me that the upper left lobe of her right lung is collapsed (atelectasis). It could be a mucus plug or possibly even from inserting the bronchoscope or breathing tube too far from intubation. They think it is fairly minor and will clear up on its own within the next few days. We can do some chest therapy to help open up the lobe, but they are not sure she will tolerate it since she just had surgery.

The echocardiogram from yesterday shows some diastolic blood pressure issues in Ella’s heart (her blood vessels are not dilating as they should). This causes the heart to work harder to pump blood. Interestingly enough, this might relate to the reason she is so sensitive to fluid overload. Although all medical opinions are still being gathered, there is a chance that Ella might have to take Captopril, an ACE inhibitor. The expected benefit would be lower blood pressure resulting in an overall decreased need in her diuretics dosage.

For the next few days, the plan is simply to stabilize her from surgery. We are going to continue with the Bumex and IV Lasix to dry her out. At the same time, they will slowly wean her off the pain medications and remove the foley catheter once they take out the epidural. Finally, they are working up to full feeds via the g-tube. This morning, she started at 8ml/hour of pedialite (clear liquid) through her g-tube. They have worked up to 35ml/hour of IV drip and Pedialite and will see how she tolerates this volume overnight (her baseline volume). If everything is okay, they will work on her food strength tomorrow.

By the end of the weekend, we hope that she is in a better place and recovered from her surgery. And starting next week, the pulmonology team can begin trying to solve the diuretic mystery. If they come up with a perfect mix of oral medications for Ella and get it right the first time, it is likely that we would go home towards the end of next week. If they have any massaging to do, we might be here even longer. Once again, do they offer time shares?

Thank you for experiencing the highs and the lows on this journey with Ella Renae. I’m hoping she will be back to her silly self in a few days so you can feel her smile radiate off your screen and brighten your day.

Please pray for improved sleep and recovery for Ella. Also, that her parents would be able to get their much needed rest that has been lacking! Finally, that we will receive wisdom and guidance on the next best steps for Ella’s health and well as our lives in general.

Deuteronomy 4:29-31
(The Message: The Bible in Contemporary Language)
But even there, if you seek God, your God, you’ll be able to find him if you’re serious, looking for him with your whole heart and soul. When troubles come and all these awful things happen to you, in future days you will come back to God, your God, and listen obediently to what he says. God, your God, is above all a compassionate God. In the end he will not abandon you, he won’t bring you to ruin, he won’t forget the covenant with your ancestors which he swore to them.

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.