Latest news on Jillian

From Jillian's Mom, Katie:

Oncologist (cancer doc), Dr Singer, came by.

Small diuretic to be given to reduce edema (swelling) and encourage the poison (chemo) to leave her body.
If she has a fever (and she has) they will start broud spectrum antibiotics.
Her PMI (something midline something) has scooched over. Her heart is center instead of right side now. Her right lung is able to function better. This is due to the cath allowing liquid to leave her body.
Cath will stay in.
Plan is now to leave the vent and cath for several days and allow the meds to do their job.

Last night we had the same nurse that Jeff had the night before. She is very nice personally but not the best nurse for me. When you say "well, I know you like to do things the natura way but i am making a nursing decision." it just does not sit well with me. I still won. I got what I wanted for Jill, not what some nurse who goes home at night to her warm bed thought would make her job easier.

At one point they had to "bag her" where they use the thing you sqeeze with your hand. The vent wasn't making it for her. The issue was poor nursing in that Jill was agitated because they were suctioning. We stoppped suction and waited for the EXTREMELY SLOW nurse to fiiiiind the meds, draaaaaaawwwww the meds, throoooooww the trash away, geeeeeet the gloves, mooooosey over...then when she went to administer the morphine she either pushed too fast or the IV she put in earlier was not in properly. (It was *later* removed because it was not viable.) Either way Jillian FREAKED OUT!!! Her stats dropped, the vent wasn't making it, all the machines were beeping and I had 5 nurses and a doctor in the room in a split second. *I* freaked out and started crying. I mean, I was still holding Jill down and talking to her but my emotions went crazy and I was sobbing. One nurse patted me when it was almost over and said "It's ok." and I replied "When you have 5 nurses and a doctor in your room and someone is bagging your kid it's NOT ok." Ya, no one had a reply for that. The respiratory therapist gave me a hug and started with "I'm not sure why the vent messed up and that made jill freak out..." I interrupted her and whispered "No, the problem is my stinkin nurse was on a Sunday stroll instead of getting my kid the meds she needs!!" Denise, who will my RT the rest of my stay, rolled her eyes and nodded her head.

So this morning I fired that nurse. I am getting recommendations from my amazing daytime nurse, Jodi, (gonna have to name a kid after her) for whom I should request as my nighttime nurse.

So, although that was the WORST part of the night there really was no best part. I did get almost 2 hours sleep but when I wasn't sleeping I was all over dealing wtih Jill. And it was nothing big, just every time the nurses touch her I want to be there explaining. And Miss slow nurse could never do all the procedures at the same TIME!! ALL NIGHT we were messing with Jill. Like now, Jill will open her mouth on command to have her teeth brushed. It just makes it a more pleasant experience all around.

And I am greatly encouraged and I am confident and I am happy because *I* am building the BEST team for my daughter. I am not being passive and allowing bad care to happen. I am taking initiative and making a real difference in Jillian's recovery. I also go stand right in the middle of the doctor's debriefing at every shift change. I even interrupt and ask questions. They have not seen anything yet.

As you can see, Katie tends to be a bit blunt. But, she is actually a godly woman who is following her husband and training her children well. Your continued prayers would be appreciated. If you are interested in updates, please comment or e-mail me and I will send them to you. I will probably not continue to post updates here.