July 25

Last year, on this very day, Kendall came to the hospital to have her bladder surgery. She apparently has a thing for the PICU in July, who knew?
We are hangin out here, waiting.

Waiting for the bugs to grow, waiting for her smile to show.

Waiting for  the lab to call waiting for the shoe to fall watching paint dry on the wall all we do is just

WAIT.

I feel in a time warp. Part of it is not sleeping since Monday night except for a few cat naps here and there, and part of it is being back on this floor, where I can see the doorway where i used to stand watch over my baby. Part of it is being here where things are the same and yet they are different. She is very sick again, but her body is handling it better. Will it KEEP handling it better or are we delaying a crash? i know this is irrational thinking but it is where my heart is at. I watch her like a hawk, inspecting her body for the little red pinpoint dots telling us we are losing. I keep my eyes trained on her monitors, watching wavy lines, waiting for them to settle into a rhythm. i lay in her bed with her and hold her through the waves of nausea that take her voice away take her eyes away take her breath away and wish I could take that away from her. I try to hold her tight to me as the fever spikes and her body shakes and i plead with God to make it stop shaking her so bad. I try to will her body to make more white blood cells to fight the bugs that are eating through her blood.

I talk to our nurse and I talk to the doctors and I try to tell them that something is wrong, something more than just sepsis. Something else is bothering her, or something else is causing this and I know I sound like the yappy little annoying puppy but I cannot let them think they are fixing one problem and ignoring another. And her nurses see it, and the doctor who sees her every visit sees it and the fellows don’t see it but then her angel doctor comes in and he knows that this isn’t kendall and he HEARS me and he orders the medicines and fluids that will help bring her back for at least a little bit.

I am being heard.

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That is a good feeling. It is not solving the issues at hand but it is an amazing feeling to be heard among all the voices, and know that I am fighting the fight my baby girl cannot fight on her own. It makes the waiting and the sleeplessness and the achiness from sleeping on the wooden boxes that are a “bed” all worth it.
We are moving FORWARD and we are ready to FIGHT this bug and figure out what is making her so sick. It is a weird feeling, to feel this “euphoric” in the PICU, with Kendall still hinging on the verge of “oh crap” sick. But I think it was just the boost my spirit needed to know that we are fighting a good fight. We are keepin on. Jockamo fee nanay and all that.

I am still exhausted. I have a long drive home this afternoon so I can get the girls to their dance class and complete a photo session and get some sleep on a real bed and shower in a real shower. I stand vigil at my baby’s bedside until I know she is not floating too far away from me and then I take a breath from my own oxygen mask and come back for the fight. I will eat some actual refrigerated food and put on some actual lotion and use actual 2-ply toilet paper. These are the things you appreciate when life comes into micro-focus in the PICU.

So things are looking up. And i’ll take that.

Now let’s go bag us some bugs.

terra.

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Comments

  1. “Found you” while sitting in picu with my 25year old son -also a mito kid . Faith and prayer is what really keeps us going on this journey.

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