I’m still sick, but I’m doing much better. Jake, my parents, and my sister are taking great care of me. I feel so grateful to my family. I feel so grateful Jake saw how sick I was and called all of the right people in terms of nurses, doctors, and family, then made the decision we were going to the ER, all without even needing to ask me what he should say or do. I think that’s something really special. He did double check I didn’t mind him calling people because he didn’t want Healthier Jackie’s wrath upon him once I bounced back.
Between Jake and my Mom both being there, I felt very safe letting go of monitoring what the people in the ER were doing. My sister ran errands for us all night long so he could be home with me and right now, Jake is picking up food for me from my parent’s house so I don’t need to worry about cooking. My Dad even ran and got me a sleep mask while I was still in the ER to block out light and my aunt offered to come too. I am thinking the ER may have started to wonder if they had a celebrity patient with all the visitors!
I slept 13-14 hours last night. Yesterday, my babysitters even deemed me well enough to be left alone for 6 hours! I have been keeping down drinks and a bit of food. The food is requiring Reglan to exit my stomach in a timely manner which is a POTS thing. The good news is, I barely even remember the past few days because my pain medicine (Dilaudid) is as strong as morphine and Phenergan (nausea med) makes me a zombie lady. Today I had some Emma time which was very nice, but exhausting. I felt the headache start to creep back and went back to resting (okay, and Jake may have suggested this should be my last thing I do sitting up with Emma so I don’t crash)
Even Emma (5) helps out. Jake sets such a good example to Emma of how to treat someone who is sick, although she does add a bit of her own attitude to it. Imagine this said in the tone parents use to tell their kid something they’ve said a million times, complete with eyebrows raised and a hand on her hip:
“Ya know Jackie, you could have called for me and I would have had Daddy get you more water and brought it to you. You really didn’t need to stand up.
There’s not much to say to that aside from, “I’ll do better next time!”
To try and prevent this from happening again, we will be doing 30 gram infusions every 2 weeks instead of a 60 gram one every 4 weeks, running the IVIG half as fast, and pre-medicating with Tylenol and Benadryl then taking additional doses every 4 hours whether I’m symptomatic or not. This makes sense to me because I was fine the day of the infusion; it was the day after that the symptoms came.
Jake says all of this struggle could be a good sign because most superheroes go through a period of discomfort before gaining their superpowers. Peter Parker didn’t feel great after getting bit by that spider but then he became Spider-Man.