THAT girl

It's all becoming a little too familiar. We bring our own meds, we administer them ourselves, we draw conclusions before the doctors. And yet, we can't seem to get it right. We were JUST here six weeks ago! She keeps crashing and her body fights to hold on. Her electrolytes go crazy and she becomes dehydrated and she spikes a fever. And it comes on so fast. She was fine Wednesday morning. Totally fine. By Wednesday evening she was a little cranky, but she's Eleanor! Girlfriend has MOODS and FEELINGS and she is going to let you know about it and she wasn't that bad. Then Thursday morning arrives and it all goes haywire. Her respiratory rate was really high and she was a horrible grey colour when she woke up. We doubled her steroid and gave her breakfast. She happily ate a piece of toast, blueberries and some Cheerios. She snuggled on Kris's lap and when I picked her up 15 minutes later, she was boiling hot. Kris and I had a laugh about how hot he is (ha.ha.ha), but when she didn't cool down after a minute or two of being out of his hotness (again, hilarious), we took her temperature again. It was 37.7, which isn't technically a fever, but it was close, so we gave her Tylenol and prepared for another hospital stay.

It was a long day. We went by endocrine first and quickly discussed a plan with them and then went to oncology to do her monthly blood draw and see a pediatrician. Unfortunately everyone else in the hospital wanted to see the pediatrician so we spent most of the morning waiting. When he finally arrived we hooked up an IV and gave her more Tylenol as her temp was waaay up. The IV was a bit of a disaster. She was really dehydrated by that point and her veins were not cooperating. After trying and failing for 40 minutes, they gave her a sedative to stop her jerking away every time they poked around. Yeah. Even though she has three people holding her down, she still needed a sedative. Crazy. She has so many bruises as a result. Anyway, they ran high doses of steroids to be repeated every six hours and started her on two antibiotics to be safe. Her fever wouldn't quit for the first 24 hours which is crazy to me. Usually Tylenol does the trick, at least for a little while! Not this time, though. The docs began to lean towards some sort of virus rather than an infection at this point, but she had no other symptoms. When the fever finally broke, it became clear to everyone that she's not sick. She's just routinely bring crippled by adrenal insufficiency.

She's THAT girl. That one who will always be sick. That one has to be extra careful all the time. It's no different from that kid allergic to everything or that kid with asthma, but it is frustrating as hell to have a kid who wakes up threatening to die.

It's not even the big C! This has nothing to do with her cancer. Well, the cancer made her this way, but it's not making her sick. When I talk to the doctors or nurses or even other patients, I don't bother mentioning cancer. It's just adrenal insufficiency. Straight up.

I met with her endocrinologist again yesterday and we are shaking things up. She agreed that two hospital stays in two months is too much. So we are doubling her florinef which will stop her sodium dropping and potassium skyrocketing. And we are switching her onto a different steroid (cortef) which shows up as cortisol in your blood, so we can track her levels. It's given three times a day, which mean we will have to wake her to give it to her, but it will mean shorter periods without 'roids in her system (good thing). And if she still has too many highs and lows, they can hook her up to a pump that delivers it 24 hours a day. I balked at this suggestion initially as it conjured up images of feeding tubes and feeding pumps and IV poles and awfulness, but in actual fact, it is a tiny subcutaneous catheter that would be in her belly. The pump is a little waistband (smaller than a fanny pack) that hooks up to the catheter. She showed me a toddler wearing it, and I would never have know if she hadn't told me. It looked like it was part of his cargo pants. Apparently they use it for people with diabetes all the time and she started using it on kids like Eleanor who can't get their levels normalized and keep running into trouble. I don't know if we will do it, but it's pretty cool...

This post is all over the place, I am afraid. If you have made it this far, congratulations! And I am sorry I didn't edit it. I just don't want to. I am taking a much needed break from the hospital after 48 straight hours. I know I did 48 straight DAYS this time last year, but we've had it really good for a long time now, so 2 days feels like forever. We are hoping to get discharged today, as she is doing fantastic, but we might have to stay another night to make sure the steroid-weaning process is going well.

And then we leave Monday for her six-month post-treatment scans in Vancouver. Oh right. That other condition. THAT cancer...

It's hard to keep track sometimes.