Jesse and I headed for CHKD at 6:30am. She fell asleep before we got out of Williamsburg. Traffic was really good and we arrived at CHKD by 7:30am.
In clinic Jesse got the chance to play with another little girl fighting leukemia. They had a blast together trying to figure out what they could get into…
Around 9:00am, our nurse put LMX on Jesse’s hand to numb where she would place the peripheral line. Then we went to see our doctor for the day. Instead we got to see the resident who took care of Jesse right after she was diagnosed and her biopsy. Jesse hopped over to him and gave him a high five.
It was his first day in clinic, but it was so good to see him. He had played hide-n-seek with Jesse on the floor back in November, and she hadn’t forgotten.
Once that was complete, we detoured Jesse into a room to get the line placed in her hand. Since the IL-2 goes in on one CVL Line and the Antibody goes in on the other… plus they can’t be mixed, so the IV and morphine had to be sent in through her hand.
Jesse screamed only after she saw the needle in her hand. I don’t think that she even realized that she’d been stuck until she saw it.
Afterwards we came up to the exact same room in the PICU. I hate the PICU. Hate it… but this is where we have to do this (although… I have yet to see her nurse for tonight. And the nurse she had today was dealing with two other children… If this is the case why can’t we take the Harry Bob upstairs and be with the nurses on 8B. I have turned the monitor so I can keep an eye on her heart rate and pulse. Like I really know what I am looking for…)
The nurse in PICU who set Jesse up didn’t give her a long enough tube from her hand to the morphine. I kept having to reposition Jesse to try and keep from yanking that line out. Failed… As we started the IL-2 our nurse in charge of the antibody said, “Why is Jesse bleeding?”
Jesse had pulled the line from her hand. The nurse made the comment that she was going to have to call the vat team. Immediately I looked at her and said, “Do not allow X to come up here. She is not to touch her.”
Luckily the VAT team sent 2 very nice people, who with the help of the LMX easily put the line in Jesse’s other hand.
We didn’t start the IL-2 until 1:30pm… which means we aren’t leaving until that time on Friday. I guess it could be worse. I was just hoping to get home earlier…
The antibody didn’t hang until 3:45pm… so that will stop at 3:45am. I am a little frustrated with pharmacy today too. I don’t understand why medicines that are marked for 96 hours wouldn’t be made earliest so that patients could get going. I am sure they have their reasons, and I am really just taking out my frustration of being trapped in this prison.
If the nurse doesn’t come take Jesse temperature by 8:30pm… I’m going to do it. I really think the temperature is supposed to be every hour… And I came back in here at 7:35pm, yet to see the nurse…It’s 8:20… Well she just half walked in and then walked away because the child next door really needs a 1-on-1 nurse. And I am not happy that Jesse is being not closely watched… I am really unhappy with this now.
Can I please go to 8B? The nurses up there would be all over making sure that Jesse is ok.