Ella had another great day of healing.
Her fentanyl has been decreased to 1.5 mcg/kg/min or .2 ml/hr. They plan to wean two more times at a rate of once every other day, except for weekends. This means that maybe in 5 days or so, they will have discontinued the fentanyl. This would be great. She has been on it since she was born. Although they have been tapering it ever so slowly, we will still be waiting to see if she has any signs of withdrawal.
Her CPAP stayed at a pressure of 5 throughout today. If she has a stable night, the plan is to wean it to a pressure of 4 tomorrow. They will monitor her for Wed, Thurs and Friday to see if she can tolerate that flow of pressure and keep her stats high. If all goes well, they will leave her on a pressure of 4 for the weekend, just so she can gain more strength. Then next week, they would look to wean it to a pressure of 3.
Ella’s feedings are going well. They started to move toward bolus feedings. Instead of a continuous flow of 20ccs per hour, they have switched it to 60ccs over 2 hours, wait one hour and repeat. Over the next several days, they will try 60ccs over one hour, then 60ccs over 30 minutes, then 60ccs in a bolus feed (all at once). This is the final feeding goal for her to reach before she can be discharged. Of course, we will need lessons on how to feed her via the g-tube and how to work on getting her to feed orally, but hopefully that part will not take too much time.
Her weight last night was 9 pounds, 1 ounce. Slowly but surely, she is gaining weight.
It feels good knowing that we are moving in the right direction and have a scheduled plan. Our hope and prayer is that she can stay on track and just continue to become stronger. It would be such a nice holiday gift to have Ella getting well enough to where going home is in the near future.
Speaking of getting well, Ella’s great Grandma has made improvements over the last 48 hours. As a matter of fact, she may be released from the hospital on Friday if she can continue to make progress. Thank you for the continued prayers. We still hope that great Grandma can hold on to meet Ella face-to-face someday.
I will be going on a business trip to LA for the next few days, but Ella’s daddy will be keeping all of us updated on the Bun. It is hard to leave her for several days, but she is in good hands.
I hope she can continue to sleep as soundly as she has been the past few nights…doesn’t she look peaceful?