Saturday, August 29th
No one was happy about starting our day going to CT at 4am, but we got it done and got back to sleep as quickly as possible. The CT looked good and showed no signs of bleeding or issues from the shunt placement. We should be able to remove the bandage from her head and stomach tomorrow.
Avery was receiving scheduled pain medicine, but they were able to stop them overnight as she wasn't in much pain at all. They also cleared her to be able to get out of the bed and move around. She was resistant at first because her neck and tummy are sore from the surgery, but after she got up the first time, the rest were no issue.
They have been slowly weaning her from the 3% drip and increasing her feeds all day. At 8pm, they were able to stop the drip altogether and disconnect her from maintenance fluids. Her feeds are currently running 50mL/hr, and our goal is 55mL/hr. She was excited to be hooked up to one less thing, and it makes getting up much quicker now. They have increased her oral sodium supplements to every 4 hours. They will continue to monitor her levels every 4 hours as well to ensure she is not falling below the threshold.
Pending no issues tonight, we will get to go back to a room on the Oncology floor tomorrow. Avery is looking forward to getting off of constant vitals and going back to every 4 hours. Everyone is the PICU has been so sweet, but she is also ready to be around the nurses that she knows and that know her. The tentative plan is to stay until Monday and receive her last dose of IV Irinotecan. Hopefully we will get discharged to go home after that.
Avery felt better today than she has all week! She played with Legos and watched the iPad. She ate 2 more cups of chocolate ice cream and half a powdered donut.
All of the fun wore her out, and she is already sound asleep. They will give her oral chemo in just a bit. We are hoping for an uneventful and restful night.
Please continue to pray for:
- Minimal side effects but maximum benefits from the chemo
- Sodium levels to stay under control
- No infections or illnesses
- Complete healing on Earth
Chocolate ice cream and Legos, two great things in one day. Now we're reading the words, "going home", praying all goes well and you are released Monday. Love and prayers, this report sounds good.
Praying all goes well today and improvement in the days ahead. Continued prayers for a complete healing miracle for precious Avery. Also praying for rest for mom and dad and for brighter days ahead for this precious family.
I started smiling with the first sentences! I know 4:00 a.m. was no fun, but she sounds like she is much better, and I know you feel better when she does!! I hope with all of the improvements, she will get to go home. It has to be so hard on you and Shon, and I know you miss the twins and they miss you and Avery. I admire you Lori Beth; God knew Avery needed a woman and man with strong faith to get her through this. Love you all! Prayers continue!
I am praying with all my heart! God is the ultimate healer!
Praying for maximum results, no illness and healing on earth.