Surgery

We found out today that Liz has to have that more invasive surgery on Monday. We are not looking forward to that at all because it's so much more major than the surgery she had yesterday and just with that she has had a horrible time recovering. She has had a raging fever most of the day and just feels yucky. Her meds are way out of whack too now and we had just spent the last 3 months perfecting those so we're trying to figure out what she needs here in the hospital. Her body doesn't make cortisol and so her reactions to stress are a lot more extreme than normal kids so we are triple dosing her on that so she will have enough to handle the load she's carrying.

Our other kids came down today to say hi and holy trauma, it was not a good thing. They came when Lizzie started majorly freaking out and then Spencer started freaking out and Calli just clung for dear life to me. Spencer, Calli and I sat down in the hallway and Spencer just cried and cried and kept saying, "I don't want you to be gone again, why do you have to be down here?" It broke my heart.

When it was time for them to go, Lizzie was literally screaming at the top of her lungs, "Spencer, don't go!" He just started sobbing so hard and said, "I don't want to stay here." I can't say I blame him - it was not a fun sight for an 8-year-old who loves his sister.

This feels hard to us...almost just as hard as the first go-around, even though this isn't as critical as her first surgery. We are hoping for a good outcome and a good recovery. The hardest thing right now is the drain in her head. Anytime she wants to go to the bathroom or even sit up an inch higher than she currently is, we have to go get the nurse to clamp her drain and then she can move and then we have to level out the drain and unclamp it. If she moves without having her drain clamped it can cause her to dump way too much fluid too fast and she could get really sick and have bad headaches. So telling a 5-year-old to not move is not that easy, but she's figuring it out.

Thanks for your prayers...we just had word that our awesome ward is holding a fast for Lizzie on Monday and we are so grateful - we don't feel worthy of the kindness that people show us. We are so glad that we can go to church here in the hospital tomorrow and Lizzie is thrilled she can just go in her PJs...I think that will help rejuvenate us and prepare us for Monday.