Sunday

Gosh, what a crazy week it's been. It felt like we never stopped moving. We had a bunch of playdates and visits from Granny and a couple of doctors appointments thrown in for fun. By the time the weekend rolled around, I was happy to sleep in a bit and not do anything, which is unusual for me. Usually I am bossing Kris around, taking him on death marches (walks by the ocean) and forced family fun, but we have laid deliciously low for the past two days. It was necessary. This week coming is pretty quiet, but you never know what is going to happen!

Case in point, Eleanor had a little episode today. After our morning walk, she started to get fussy. I put her down for an early afternoon nap. When she woke, she was burning up. Her temp wasn't that high (37.5), but she was definitely warm and irritable. I took it again half an hour later and it had gone up (38.2), but still not to fever-range (38.5). I called the hospital to find out protocol as we did not want to stay overnight in the paeds ward if we didn't have to. There are so many bugs there, and she would be so susceptible to catching something. He told us they would run antibiotics in an isolation room and if her counts were decent (which they should be), we could go home. He suggested we wait an hour, and if her temp was the same, we should head in. We gave her a heavy dose of steroids, lots of fluid through her tube and by mouth and sure enough, her temperature went back to normal. It's still fluctuating a bit, but hasn't gone over 37.6 in a couple of hours.

I don't like this sort of thing happening at home. It's such a crapshoot for us and it's not an oncology thing - it's an endocrine issue, which seems a million time worse. See, we have been adjusting Eleanor's steroid. We were told that 0.8ml of prednisilone was optimal for her, and we have kept her at 1ml because last time we tried to drop it, she ended up in PICU with an acute adrenal crisis. We are nervous, but thought she was ready, so over the past week, we started lowering the dose, 0.1ml at a time. Balancing hormones and steroids seems much more like an art than a science. I'm sure it is based on fact, but a lot of it is how the patient feels. That's very tricky with a bobbler (toddler that doesn't toddle around and is still very much a baby). Try as she might, she can't communicate her symptoms very well. She is also quite a bit bigger since she last saw her endocrinologist at Children's. I'm clearly still trying to figure this all out...

She's sleeping soundly now and is nice and cool. Her breathing is even and she seems okay. Nevertheless, I am scared to leave her alone. Acute adrenal crisis is not fun. Not one bit. I hate thinking that my restlessness and get-up-and-go attitude has contributed to her health hiccup tonight, but that's probably exactly what caused it. That, and missing 0.2ml of steroid. I don't know. I'm somewhere between exhausted, bored and terrified and I'm very much looking forward to tomorrow and our clinic visit!

I would also like to do a shout-out to all my friends and family in the UK and ROI who are celebrating their mothers today. I know some pretty kick-ass mummies over there, some very new and some seasoned vets, and they all deserve a lot of love and recognition. I'm thinking particularly of Emily, Yvonne and Eleanor's great-grandmother Lily. I hope you ladies had an excellent day. You are amazing.