PICU island-style

Ugh.

That pretty much sums up the last 36 hours, but for more details, keep reading...

In the wee early hours of Friday morning, Eleanor started pooping a lot. Because she had been particularly difficult to put down, I didn't think much of it; I just changed her diaper and went back to sleep. Every hour she would let out a little moan, I would change her diaper and go back to sleep. I was aware of how heavy they were, but she sometimes has big poops. No big deal. I did notice around 5:30am she looked really sleepy while I changed her, but I figure the events of the night were tiring and she was just sleepy. Kris came and got her around 7:30 and was planning on taking her for a walk so I could sleep. I rolled over and excitedly went back to sleep. SLEEP!

Ten minutes later he came back in a panic. "We have to go the hospital - she won't sit up". I'm not going to lie, Kris says this kind of stuff a lot, and I have to figure out a way to calm him down and let him know everything is going to be fine, but this was different. I got up, got dressed and away we went. I phoned the oncology clinic to let them know we were coming, and that Eleanor wasn't well. We rushed out there. By the time we reached the hospital, she was completely lifeless in Kris's arms and was having trouble responding to his voice. Her colour was awful and her skin was very mottled. The staff in the clinic were amazing. They took one look at her and said, "She has to go to Emerg" and showed us the way down. They were incredible. Going to Emergency sucks. It is slow and tiring and terrifying, but when you show up with your own nurse AND doctor, you get results! She was immediately taken into a room and they began a bolus of IV fluid and her emergency stress dose of hydro cortisone (which we somehow remembered to bring. Go Team Goudie!). They took her temperature and it was 38 degrees. I was stunned because she has never had a temperature that wasn't a neutropenic fever. Her blood counts were great two days prior - how could she have a fever? I kept begging them to give her Tylenol but she needed blood work done first. In the fifteen minutes or so that we waited for blood cultures, her temp climbed to 39.5. Poor little bear was so out of it. She was lying on her sleeper, completely exposed and looking so vulnerable. She could only roll her head a little from left to right. When they pricked her finger for blood gas, she barely even flinched. Where was my roaring, angry animal? She had been replaced with the sickest little baby.

Once they got some antibiotics and Tylenol and ibuprofen into her, she started to perk up, and we were out of Emergency and up to the PICU in about an hour. As the day progressed she got better and better, and by about 4pm she was back to about 90%. I decided she was too "good" to be left alone for the night, so I opted to stay in PICU family room. If she had been more out of it, I would have gone home, but she was far too aware of what was going on to be left with the nurses! She was really sleepy all evening, but couldn't get to sleep, thanks to all the steroids she was getting all day. At about 8pm, our nurse brought in a bed for us to sleep together. This usually works, but God almighty she was ANGRY all night long! I think a lot of it was to do with hunger as well. Steroids make you hungry, but we couldn't feed her until her sodium levels came down.

Oh right. Her sodium levels were through the roof.

We are still unsure of why this all happened, but basically what we think is that Eleanor got some kind of tummy bug that caused the diarrhea, which caused her to lose a lot of fluids. Your adrenal glands help regulate sodium levels in your body, but we have been systematically shutting down her remaining adrenal gland, so she gets a lot of steroid supplements to do the job instead. We also give her extra salt in her feed. Somewhere along the line, this got all out of whack, and combined with the loss of fluid from the diarrhea, it sent poor Eleanor into Acute Adrenal Crisis. This is my thinking anyway. They aren't entirely sure WHY it happened, so we are just treating what DID happen.

She will stay in PICU until her sodium levels chill out. It dropped quite a bit overnight, but they don't want it to drop too quickly. I am hoping we will be out on Monday, but I have no idea. So far there is no talk of going back to Children's, which is nice. We would really love to have Christmas at home with our family, but we really just have to take it one day at a time. I am taking today off. I had an awful night with a hungry, angry baby so Kris is looking after her today, and I will go back tonight. I am looking forward to a big nap and a shower so I can feel human again. It's been quite a day.

Thank you all for your support and well wishes. She is doing much better and I am hoping there is no lasting damage from the fever/fluid loss.

Oh, and this is what Eleanor looks like when I am trying to get her to sleep...

I am ANGRY!

And this is when Kris does it...

Sleep, sleep, sleep...