The Nightly Update, Sunday Night

First things first. Being at home with Zinashi overnight was fantastic. We got very snuggly, and I got a full night's rest.

Frankly, I probably could have slept at least three more hours, but I needed to do laundry and style Zinashi's hair, so I dragged myself away from my pillow and started the day at 9:30am. I know. I am whining about starting the day at 9:30am. I am as surprised as you are that it was so painful to wake up at 9:30am. I might be more tired than I thought I was. But it was good nevertheless to wake up to a smiling girl who was so happy that I was right there next to her, where I belong most of the time, and it was good to get some practicalities taken care of as well. Laundry got attention and Zinashi got a new hairstyle, and we headed back to the hospital together to spend time with Elvie as a family. It was good.

Then Jarod and Elvie went home and everything went straight into the toilet. It's all mostly fine now, but it was a stressful evening. I'm just going to copy and paste the Facebook update after this photo of Elvie giving us the sad eyes; if you read there, you can skip it. Tomorrow I'll be back with another update, and hopefully it will be much, much better.  Goodnight, all.

Tears are gathering; please stop touching her with needles and blood pressure cuffs.

Elvie did well all day until about 5:30pm, when the nurses who came to change the dressing on Elvie's central line noticed a bit of pus around under the dressing. Shortly thereafter, the central line stopped working altogether, so it had to come out, and Elvie needed an IV in order to continue receiving antibiotics and morphine.

It took three IV attempts (history of malnutrition + lots of stick and pokes already = challenges in the vein department) to get one in, and with each attempt, then the central line removal, she got more and more upset. Something happened internally when she got worked up, and her incision drain started draining a lot more fluid. As in, it's been maybe half filling the bulb used to collect fluid in half a day, and it was getting completely filled within 15 minutes. One time it only took 8. It was alarming, to say the least.

There was a bit of concern that it was a urine leak since there had been work done on her kidneys and bladder, but the peds surgery doctor who was on duty reviewed the surgery report and said it's very unlikely. A fairly large clot came out at one point so the hope is that it's just lymphatic fluid that had built up and couldn't escape because of the clot. The drainage has slowed again now, and we will have to wait until morning to get a lab report back that will tell us what is in the drained fluid.

All this went on between 5:30 and 10:30pm. Elvie had a bit of a break between 7:30 and 8:30pm and rested a bit, but other than that spent the entire evening wondering why all of us are so mean. I grabbed dinner quickly while she dozed around 8:15, but didn't get a chance to eat it, which did not make me the most helpful mother ever as all this was going on. I had to sit down after I saw all those cups of fluid lined up is what I'm saying. The doctor who was removing the central line asked me to hold Elvie's head to the side for her, and I said, "I have to sit down. Can you get a nurse?" But at least I could still pet Elvie's head and wipe her tears.

She is finally asleep, and I've made up my chair bed and brushed my teeth. I'm hoping she'll sleep soundly, and in the morning we'll have good news regarding the contents of the fluid and what that means in terms of her recovery.