"It won't hurt, I promise." If I hear those words one more time I'm going to scream! How can they promise anything at this point? How do they know what hurts and what doesn't because if they ask me...this hurts! This is hard and I wanna go HOME! That being said, home hasn't exactly worked out for us the way we thought it would so I AM glad to be here. I am grateful that we are here in good hands...not that we were in bad hands. Now we have new good hands, new minds and new equipment.
We decided to come to Arkansas Children's Hospital in Little Rock when her fever spiked to over 103 degrees yesterday and her body was covered in an irritable red rash. We could've had another xray done in Ruston, waited to consult with doctors in Ruston and Shreveport, but we decided to come here instead. Our biggest questions are, "Why isn't this going away," and "Why is she getting such a high fever on two strong antibiotics?" Of course, "What caused this?" is still lingering since we have not been able to grow or discover the source of infection.
Today was a day of waiting. After they removed her pic line last night because they feared it might be a source of infection, we waited for the lab results. We waited for the ct scan all morning before they switched it to an ultrasound instead. Then we waited for the results. Our last hospital overnighted a disc of our previous xrays and scans so the doctors can compare images of her lung. Then we waited for them to collaborate. In the middle of the waiting was the shuffling around a crowded room that we shared with another family of three. Cramped, crowded and noisy. Ideal situation for patience to grow.
The day has brought two blessings. 1. They gave us a private room since we may be here a couple more days. 2. They pretty much ruled out surgery! The remaining pleural fluid is not significant enough to attack with surgery. Instead they will monitor her fever pattern overnight and decide which antibiotics to use tomorrow. The vancomyacin and zosyn combo was not as successful as we would like.
Her spirits are high considering....well, considering this is our fourth hospital visit in a month and that she has had off and on fever since April 15. She is adamant about becoming a nurse when she gets big - a nurse that takes care of babies. She requires step by step explanations for EVERYTHING, watches EVERYTHING and hears EVERYTHING. Last night she applied the oil that dissolves the stickiness from the large, clear sticker covering the pic line. She wiped and peeled with diligence. She watched the doctor pull a tube 20cm long from the crook of her tiny arm. She didn't even flinch. She is becoming ambidextrous and understands the meaning of that big word. She also asks when her medicine will be hooked up and knows that the beeping machine signals that meds are all done. She is slowly losing her fear of needles since she watched the last two sticks and replied, "That didn't hurt," afterward. Today she "stuck" her new doll that is used for medical play and applied three stickers on its chest to search for vitals. I think she is already a pretty damn good nurse.
She is still fighting this.
As for me, I feel like a tired mama bear backed into a corner, snapping at everything around me, trying to protect my little one the only way I know how. I question everything the nurses do. As soon as they tell me something I immediately follow with, "And what is our plan to address that?" When she runs fever and it takes too long for the dang Tylenol or Motrin to be sent up from the pharmacy I stand in the doorway and stare at the nurses station until it arrives. I insist that a Child Life specialist explain everything to her and then I tell her the same thing in a better way because I am a really good teacher and I just do it better. I administer her oral medications to her because she won't cry if I do it. I still help her go potty and I feed her if she needs help. I'm a pretty damn good nurse too.
