A Rough Day

Sweet Ella asked for a milkshake today. Of course I got it for her and she only took a couple sips. 

Today was rough. My little Ella had a bad day. Only positive is that she slept A LOT!  I was glad she could let her body rest.  I know it's exhausted. Ella woke up around 7:30 this morning and asked for a big breakfast!  Of course I made it for her - homemade waffles, eggs, bacon, and banana. She ate most of it and I was happy because I knew that it would probably be the only full meal I could get in her for the day.

She woke with a 101.4 fever - sad that I was relieved it was that low - yes that is low these days. She remained fairly comfortable till about 11. Her fever then spiked to over 103 and the chills and aches came. Of course I treated it with tyl. She went to bed and slept till 4. She then could barely walk, barely lift her head. It was pitiful. I took her temp and it was 105.1 (orally). I called her doctor and gave her ibprofin. In about an hour, she was down to a 100 temp and ate a good dinner and even played with her brother some.

Since we know that Ella has pfapa, we know not to panic or rush her to the ER when she has a very high fever - though it is tempting.  It's unfortunately a big part of it. It's painful to watch. I had a mini meltdown to her doctor on the phone. I said it is just not an option to watch this another day. He reminded me of our plan and said he would examine her anytime and any day whatever helped. The plan is to give Ella a single dose of the steroid, prednisone, at the start of her next episode. This should immediately end that episode but possibly bring the next one sooner. Oh how I pray that doesn't happen. My biggest prayer is that it ends completely. Please pray for her!