Day 83 – update

Still in PICU because Ryman’s heart rate when sleeping is in the 170-180 range and awake is in the 190-200 range. Not good! So the floor won’t take us with that issue. Doctors still unsure of what’s causing it. Brain ultrasound was good so nothing neurological. No growth on any of the blood cultures yet. Her metabolic acidosis is getting better. She is still a little anemic but not enough to need a blood transfusion yet. Her breathing still seems a little heavy. One doctor thinks it could be the Ammonul side effects and another thinks it could be fluid overload from all the fluid we are pumping into her. She is on all the Ammonal, arginine, D10W fluids and a continuous feed of 28ml/hr. So tons of fluid which can cause your heart to work overtime. But we need the Ammonul until Dr. Morgan thinks she is ready to come off of it. Her ammonia was 55 both times we tested it today. So I am hoping she is metabolically stable enough tomorrow to come off the Ammonul or at least decrease her fluid intake. Which will hopefully result in a lower heart and respiration rate.

Sawyer did get to go home last night. He is doing great but please pray for strength for his parents. It is very scary to know that even when our kiddos are acting normal they could potentially have ammonia above 100. I know its going to be a very scary thing to take Ryman home from the hospital again. Especially since she had an ammonia level of 221 and seemed perfectly okay.

My friend Rachel sent me this and it really made me understand that it is okay to be frustrated. I love her heart so much.
“The neatest thing to me about being a Christian is that when I have doubt or fear, I can take comfort in the fact that people who love me have strong faith and can petition The Lord on my behalf. When you feel like your prayers aren’t being heard or when you get frustrated with God or scared, it’s ok. He’s big enough to handle those feelings. AND, you have an army of people who are praying to The Lord… Asking him to surround you and Jeremy and Ryman with his Holy Spirit. When you feel like you can’t pray the same prayer one more time, know that you have SO many people who love you who are talking to God on your behalf. You are loved. I know it’s hard to see sometimes but Ryman’s life is glorifying God already in the midst of this. She is helping people lean into The Lord and helping people to learn how to trust him and him alone.”

Just one of the examples of why I love Jer so much: he told me to get some sleep and surprised me by taking an earlier flight to be back home with Ry and I. Best husband and daddy, I didn’t think it was possible to love him anymore than I already did but I was wrong, I’m getting to fall in love with a whole new part of him.

PICS from the PICU

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2 thoughts on “Day 83 – update

  1. Please lord help this child, and lord help this family! We ask these thing through the name of your Son, Amen!

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