Ella did good last night as far as sleep, but they still worried about her urine output. So at 1am, they switched out her formula for Pedialyte. She went on that until 7am to help place some of the fluid back into her body. Yes, this meant that the parents got a bit more rest – – praise God!
When labs were drawn this morning, her BUN was 23. In the past, that would have been a great place for Ella. But now that Ella’s true issues have been resolved, a BUN of 23 is still on the dry side (normal is 12-18). So, they are hoping to see her BUN get into the normal range over the weekend.
Because she is a bit dry, her heart rate is higher than normal by about 30 beats. It will be interesting to see if this gets corrected once she stabilizes.
Once again, we had challenges with feeding today (gas, gagging, retching, etc.) but each day is getting better. The plan is to keep her on the Peptamen Jr all night and not switch to Pedialyte, regardless of urine output. They want to see if she will urinate in the morning.
The good news: they discontinued Bumex again today and also discontinued Diamox, which also has diuretic impacts on the body. So now the only diuretic she is using is aldactazide. And the captopril has been amazing for her. I still cannot believe she is doing so well and is not relying on diuretics.
The plan for the weekend: get her less dry in a normal BUN range, push through the feeds and do our best to push her on the volume/rate of food she intakes during the daily feeds.
They will still assess her progress and medications over the weekend. We’re hopeful that the diuretic dosage will continue to be minimized.
All in all, Ella looks fantastic. We have our anomalies to figure out over the next few days, but she looks amazing and seems happy and comfortable.
I’d love to write more tonight, but I am fading fast. I will just end with this verse.
Psalm 111:4
He has caused his wonders to be remembered;
the LORD is gracious and compassionate.