It was a rough night again. Ella woke up five times, retching and crying in discomfort. Each time, it was near a dose of withdrawal med or in-between withdrawal doses, so we need to give Tylenol to help calm her down. The main symptom now: the ongoing withdrawal symptoms. She is touchy, gets agitated easily, and acts like she is on major drugs. It’s hard to experience her this way since her baseline behavior is so different. Normally, she is so happy. She is just cranky and agitated most of the day which is tough on the emotions hour after hour.

Ella had a repeat echo this morning. We haven’t received the official report, but just based on the preliminary report, it looks like the sildenafil is working and there is less cardiac and pulmonary pressure than any of the prior echos that she has had completed here at CHOC. She is on a double dose of Sildenafil, but at least we know it is working and being absorbed through her gut.

We decided to increase feeds today from 80ccs per hour to 120ccs per hour for three feeds and this evening at 8pm, we gave 160ccs. She is tolerating it well and is emptying better than we’ve seen even prior to surgery. They want to see her go at this rate for a couple more feeds and then increase to 200ccs per bolus feed. Our goal is 275ccs per feed. From what we can tell, it seems like she might make her goal fairly quick. Since she started doing well with feeds today, they turned off her TPN and lipids (IV nourishment).

We opted to decrease her dose of Miralax to one dose per day. She is stooling, but it is watery. Maybe she doesn’t need Miralax anymore since she does not have a bowel obstruction? It’s hard to know, but we’re hoping to figure it out in the next few days.

From a diuretic perspective, they gave the last dose of IV Lasix today and are just planning on giving Bumex and Aldactazide tomorrow. It would be ideal to wean the Bumex more in the next few days too, but that will not be a mandatory requirement for going home. We may just have to monitor this with her pulmonologist remotely from home for a handful of weeks.

For withdrawal, they weaned the Methadone dose today via IV and switched the Ativan to an oral dose via her g-tube. Since Ella did not seem to be doing well with her withdrawal symptoms, they increased the Ativan to 2.0mg per dose (versus 1.2mg), but instead of giving it every 4 hours, we are giving it every 8 hours. Tomorrow, they plan to wean the Methadone more and switch it to her g-tube versus IV. I think by tomorrow we might have everything (meds and feeds) switched over to her g-tube to where we can remove the central line tomorrow or Friday.

We tried taking Ella for a wagon ride today, complete with all of her attachments. Unfortunately, she was agitated the whole time. Normally, she loves that type of ride. Once again, I can’t wait to have my girl back.

Right now, it appears that we might be here for another 3-5 days. It will be so nice to be out of the hospital. I just wish she was sleeping sound at night. Currently, that impacts just my sleep but in the RV it prevents everyone from resting. So, we’re praying for a miracle recovery from withdrawal symptoms so that Ella can start feeling good again and all of us can sleep well.

We praise Him for our baby girl. We thank Him for her progress today with feeds and ask that He heal her body along with her withdrawal symptoms.

Psalm 29:11 (NLT)
The Lord gives his people strength.
The Lord blesses them with peace.