A better Day

Yesterday was hard. Today is better.

Yesterday I couldn't function. Today I am.

Yesterday I sat and stared and could not move. Today I'm up, awake, and facing the challenges set before us.

Yesterday I napped off and on in the chair as my dear friend stood beside Ashley Kate's bed and kept a watchful eye on her. Today I'm rested.

Yesterday I drug myself down the hall, to the community shower, and stood still as the water trickled down my cheeks and mixed with my tears. Today I have yet to shed any.

Yesterday I could not believe we were back in this place. Today I woke up knowing that yes, we were really here.

Yesterday I felt numb. From my fingers down to my toes. Today I'm alive. No longer stunned, or numb, or speechless.

Ashley Kate made no progress on the ventilator over Friday evening. As a matter of fact things only got worse. Higher settings, more pressure, requiring lots of support. Last night she began to turn around and we have been successfully weaning several vent settings every 6 hours. Her chest x-ray is not perfect, but its improved. Last night we bathed her. Washed and braided her hair. Lifted her limp body from one bed onto another. We dressed her. Finally figuring out how to keep her from lying there naked, exposed, and humiliated for every professional to see. I took a pair of scissors to the back of all her gowns. I split them up the middle from the hem to the neck and made "hospital gowns" out of all her own clothing. I then slipped her arms into the sleeves and gently spread them across her body allowing her to once again look like herself. As much as she possibly can in this situation at least. Its important for me to maintain her dignity. She is a little girl who deserves to be looked upon as one, treated as one, and dressed as one. The first smile I had felt in days crept across my face as I looked at her lying there covered in her nightgown. She is still so very beautiful!

On rounds this morning we set another plan in motion. Knowing all along that things can change in an instant, but its still nice to have a direction to follow. Her cultures show no growth from the fluid draining out of her abdominal cavity. The surgeon stated, "Thats good and bad" I was confused. Good I get. Bad I didn't. She feels that something is hiding from us. We had no choice but to cover her in strong antibiotic coverage, but it is probably keeping us from finding the source of her infections. She shared with me it was "scary" not knowing what was causing her to be sick last week. But, we are proceeding anyway. Ashley Kate requires a permanent central line placement. Tomorrow they are trying to schedule this to be done(it may not happen till Tuesday). We all want to take her while she is already on the ventilator as opposed to her healing, coming off, going back down, placing another breathing tube, and exposing her to more trauma. Although it is frightening, Dave and I are convinced this is the safest plan for her. The team is on the same page agreeing that it has to be done and now is the time. So...we are going back down to Interventional Radiology sometime tomorrow. The hope is that after she recovers she might be able to be weaned off of the ventilator on Tuesday or Wednesday. All of us are hopeful she will continue to improve and maintain her current schedule of weaning.


We also plan on checking the status of the fluids tomorrow afternoon by ultrasound. Ultimately helping them to decide if she will require more drains to be placed or not.


So overall its a better day. Ash is still intubated, but stable. She still has pockets of fluid inside of her abdominal cavity, but they are draining less and less every hour. She has been fever free. She is here. Asleep, but still with us. Our kid is tough. As tough as I've ever seen and deep inside of my heart I know she can do this. She can do it all. Heal her up, send her home, evaluate her, list her, call her back, and lets do this again. Only then will she get her life back. I believe she has a life ahead of her just waiting for her to live it. Our normal days have slipped away for a while, but I think we can find them again. It may take a year of more to get through all of this, but once she does we will live each day of normal, mundane, like it was the best day of her life. You wait and see.