The last 24 hours were tough.

Ella was up all night last night, literally every 30 mins or so. She would try and get comfortable, but wake up fussing and crying. I think it was tummy discomfort. We have not had a night this rough in about 2 weeks.

We went back and looked at the blog to see her progression of food on this new formula. Here is a snapshot:

Wed, Oct 1st: Care Conference. BUN of 9. Decided to try EleCare, started with 20 kcal, rate of 30ccs per hour continuous.
Thurs, Oct 2nd: Increased to 24 kcal, rate of 30ccs per hour continuous
Fri, Oct 3rd: Increased to 26 kcal, rate of 30ccs per hour continuous
Sat, Oct 4th: BUN of 34. Same schedule: 26 kcal, rate of 30ccs per hour continuous
Sun, Oct 5th: Same schedule: 26 kcal, rate of 30ccs per hour continuous
Mon, Oct 6th: BUN of 34. Increased to 27 kcal in the evening, rate of 30ccs per hour continuous
Tues, Oct 7th: Increased to 27 kcal at a rate of 31ccs per hour in the evening continuous
Wed, Oct 8th: BUN of 33. Increased to 28 kcal in the evening, rate of 31ccs per hour continuous
Thurs, Oct 9th: Increased to 28 kcal at a rate of 32ccs per hour in the evening continuous
Fri, Oct 10th: Same schedule: 28 kcal, rate of 32ccs per hour continuous
Sat, Oct 11th: Changed the daily feeding schedule: 45ccs over one hour, 60ccs over one hour, 75 ccs over one hour, 90ccs over one hour, 100 ccs over one hour. Continuous feed at 34ccs for 8 hours overnight. **Started to have challenges**
Sun, Oct 12th: Changed the daily feeding schedule: 100 ccs over one hour, 5 times per day. Continuous feed at 32ccs for 8 hours overnight. **Continued to have challenges** Started to behave in a way that you could tell she did not feel great.
Mon, Oct 13th: BUN was 37. Tried to feed 100 ccs over one hour, 5 times per day, but missed a bunch of food due to hospital discharge, continued to have food challenges overnight.
Tues, Oct 14th: Went back to 100 ccs over one hour, 5 times per day. Continuous feed at 32ccs for 8 hours overnight. **Continued to have challenges, especially overnight**
Wed, Oct 15th: From 9am -11am, used 28 kcal at a rate of 32ccs per hour, continuous. From 11am – 3pm, used 28 kcal at a rate of 25ccs per hour, continuous. From 3pm forward, used 26 kcal at a rate of 25ccs per hour, continuous.

So after consulting with Dr. Abman (pulmonologist) and Dr. Soden (GI) today, we ended up at trying 26kcal at a rate of 25ccs per hour, on a continuous feed. Also because we are reducing her volume of food so much, we are skipping her dose of diuretic this evening and her morning dose.

It stinks to have to take this many steps backwards. But we want to go easy on Ella with the food. If we cannot get her to tolerate the EleCare, then we have to look at placing a tube in her nose and by passing her tummy altogether for a time frame (NJ tube). That is not something we want to have to do, so we are more than willing to go slow.

I think it is just discouraging. She had her surgery on September 3rd and she is still having a hard time with tolerating food in her belly. We expected to have to vent her a lot because the nissen would be tight, but digesting food was not an expected problem.

It is hard when she can’t sleep at night, when she is retching a lot, clearly uncomfortable, and there is nothing you can do to make it better for her. It’s just a rough deal to endure.

We have a nursing visit tomorrow morning from a skilled nurse. She will come to our home to do an assessment, weigh her, etc. Eventually, this is the same nurse that will come to our home to administer Ella’s synagis shot. I’m so excited that insurance approved the nurse to visit our home for this purpose. With winter approaching, the less we have to take Ella out, the better.

Also, we have to go to the Children’s Hospital to weigh in and get labs done. Once we have that information, we will consult with pulmonology to see how they want to proceed with the food and diuretic balance. Thankfully, she is not having any respiratory issues, likely because she is too dry.

Please say a prayer for sweet Ella. She is having pain of some kind (we think it is the rate and density of the food). We pray that the doctors will be given wisdom on which food and combination of meds will be the best for her.

Also, pray for us. We miss our girl…tremendously.