As all of you know, Ella has had a rough week. Last week this time, she was starting to go down the wrong path. We feel that the key change that made things turn for the worse was switching her diuretics to be administered orally vs IV.
When this was changed, they also increased the volume significantly plus added 2 more diuretics since they noted that the atelectosis was kicking in. She has very little reserve and any slight changes can make a huge difference for her.
Dr. Kays returned today and confirmed our theory. He was not happy that the diuretics were modified while he was out of town.
In retrospect, the nurse practitioners simply wanted to come up with a plan to get Ella home with us sooner versus later. However, the steps that needed to take place in order for that to happen were too many changes, too quickly for Ella. If we have learned anything, it is to make changes slowly.
Dr. Kays stated that it is more important to get her back to where she was last week before all these changes took place. So, he’s now only using 2 diuretics – lasix and diamox. The dosages have also been reduced, but he ordered that they be given via IV versus orally.
He wants to watch her progress and begin to wean the oxygen back down to 500ml. Once she is back to that place, we will discuss further steps.
The two main challenges at this time are her feedings (finding the proper formula and schedule), and the switching of the diuretics from IV to oral. This could take some time. We need to be patient with these last challenges.
We spent all day with Ella in the NICU today. A few times, we caught some good smiles. This means that she must be feeling better.
Please continue to pray for our little girl. We want her to get stronger, gain endurance and hit all her milestones so that she can come home with us.
On a note of praise, Par is getting ready to go home tomorrow!!! Thank you for all the continued prayers for this boy and his family. Although Ella will miss sneaking across the NICU at night to snuggle with Par, we are very excited for them. Please pray for their safety on their drive home to Birmingham.
