It's been a busy day for us, but not too busy for Ruby. Lizzie has been visiting and it's been great to spend time with her. ❤️ Unfortunately, Lizzie had a runny nose and sneezers yesterday and today, so we decided to postpone her visit. Ruby is pretty fragile and we don't want her to get sick. 😔
Ruby is 7 months old today! 🥳❤️
Ruby's day has consisted of some good naps, her sedation is higher than it was, but less than when she got back from the OR. The doctors want to keep her moving, but not too much... and also don't want to increase her sedation since she is already on a lot and doing that would increase the time to wean off. She is handling it very well, she is comfortable and is enjoying sticking her tongue out and sucking on her soother. She had a rough patch around 4pm but was able to settle down after a bit thankfully.
They've brought the oxygen on the vent down since last night. She is at 45% and tolerating it well. They haven't changed the PEEP yet (still at 10), but plan to once she is at 40%. Her oxygen saturation is still in the high 90s!
Her heart rate is still a bit higher than they'd like because they are trying to switch to an oral medication from the IV infusion. They have increased her dose a few times over the past few days and have increased it again today. Initially we didn't think it was doing much for her at all, but the doctor on tonight assured us it is and this sort of thing is common when they are trying to get the dosage right. They don't want to over shoot and give her too much, and every child metabolizes the drug differently - so there isn't really a standard amount that just "works."
They just took her temperature and she does have a small fever, so more cultures were be done to check for infection (she is still on a course of anti-biotics from earlier this week as a precaution before her trach procedure). In the meantime it is getting tylenol around the clock and advil as needed to make sure she is comfortable. The higher temp could just be due to post op inflammation but they want to cover all their bases.
We still have a long road ahead, especially once they start weaning the drugs, but she has come a long way and we are thankful! ❤️
We are continuing to pray for strength, and healing. That the Lord will guard her life and make a way through this.
Thanks for your love and prayers and all your encouragement! ❤️
TLDR: Lizzie was sick so no visiting Ruby this time. O2 is down to 45% on the ventilator (lowest amount yet!) And will start weaning PEEP soon. Still working out dosage for heart rate medication. Has a small fever so sending cultures and giving Tylenol- will start antibiotics if needed.
