Getting Through Tonight

In the last two hours things have changed with Ashley Kate. I knew something was going on with her.

She woke up hollering which is very unlike her.

I went into her room to find her curled up in a little ball and trembling. Immediately I knew I'd seen this before.

Its an infection.

No fevers, but uncontrollable trembling and a look in her eyes that tells me there is a line infection.

Its brewing. Bacteria is there, in her blood stream. I've seen it before.

I'm sitting up with her for the night. Watching her closely. Monitoring vitals. We've just got to get through tonight. I'll get blood to the lab asap and get orders first thing in the morning. Going in tonight is absolutely pointless. We've done this a hundred times before. Literally. We've rushed around and tried to hurry just to arrive and learn they won't do anything for us. Not at night. Not outside of our pediatricians office hours. Maybe force us into an ambulance so they don't have to deal with a sickly, pediatric patient. Our doctor's not on call tonight so instead of starting antibiotics they'll make us sit. He's the only one in town not afraid of Ashley Kate. The only one in this town willing to jump ahead of the game and get things going before blood work comes back. Nope, as long as she's stable I'd rather sit here at home with her than in a hospital ER or an ambulance.

Have I ever told any of you how much I HATE this part of her life? The sick part. The central lines. The transplants. The awful helpless feeling I have when it comes to caring for my daughter. Medically fragile status SUCKS! Poor prognosis SUCKS! Terminal illness SUCKS!

Have I ever told any of you how much I LOVE the other parts of her life? Giggling. Silliness. Happy days. Twinkly eyes. Infectious laughter. Ornery attitude. Joy.

I love this little girl. I adore my daughter. I'd do ANYTHING to give her just a normal life. Absolutely anything.