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.