Day Two

When you pass through the waters, 

I will be with you. 

Isaiah 43:2 

Today is day 2 of Clara's LTR post op in the PICU. She is in a lot of pain. High doses of morphine every two hours. I did get to hold her for alittle bit today, but that seemed to make her more agitated and not relaxed as I thought. We are keeping the lights off, little to no talking to keep her calm. She sleeps on and off and cries. Crying usually leads to her holding her breath and turning blue. This same stuff we saw last surgery over a year ago.

 She just doesn't understand what's going on. I spent the night and today Jason is here. We are hoping to talk to attending doctor soon. Also her arms still restrained so she want mess with her trach. 

Her trach sight looks really yucky with dried blood and secretions just have turned almost back to their normal color from a bloody red. I guess only my trach friends will understand that one. 

They are running pedilyte now through her gtube just to get her belly ready for feeds. I did have a consult with a nutritionist today about her feedings. We are going to use Nourish, what we use at home for her continuous feeds. However they don't have that here, so thankfully I brought enough from home, with about every other feeding supply. We've been here a lot, so I know the deal:) 

So glad we had the gtube put in over a year ago. Everyone here was so right about needing it for this surgery. 

No feeding by mouth, obviously. I am also going to ask for a speech consult soon before we leave about her eating and drinking. Maybe a swallow study? 

I guess for me, I feel unsure how to help her. Being with her and getting help for her. I think is enough.  Jason and I are just trying to rub her little head and tell her it's okay. She is in and out of sleep. I hope she knows we are with her. 

So much of Clara's entire life has been here. Most of it has been really really hard for her. Also hard for us to see her go through. However there has been joy. Joy in positive news, joy in moving on, joy in wonderful people we get to see when we come back, and also joy in the fact she was born here. 

Today I read one of my favorite blogs, by Holly Gerth, about the scripture above. My favorite scripture. 

"We serve a God who comes for us in the rain. His timing might be different than ours but he always comes. 

When our situation changes. God doesn't change. Neither does his love for us. 

We shouldn't always pray To stay dry. We  can't always ask for absolute safety or a perfectly comfortable existence. We should ask for the courage to keep running in the rain when that's what it takes because God is coming for us. He is already on His way. 

I may not always understand His plans but I know his heart and I know he is good" 

I know without a doubt God is with Clara now and always. He sees her life, her experiences and has big plans for her. In hard times and in joy we continue to run through it all with her. 

Thanks so much for the encouragement and love! We look froward to coming home, not sure when yet. I'm thinking a while longer.