04 Feb Steady
Keegan’s holding steady with a little more improvement in his ferritin levels today (11,000). The rest of his labs look the same. We went ahead and switched to oral methylpred tonight at the same dose. If he tolerates that over the weekend, his last “pulse” dose will be Sunday morning. Then, he will get no steroids Sunday night. If labs continue to look stable Monday morning, he will go home on 7mg (so essentially, 30mg to 15mg to 7mg over three days) and follow up with more labs in clinic next week. That is a pretty fast steroid wean, so we are praying it goes well. I anticipated we would switch back to prednisone with the switch to oral tonight, but they didn’t. We will have to ask tomorrow if he will stay on methylpred/solumedrol for good or just through the end of the pulse.
It’s hard to say whether today was an improvement or not in the way Keegan actually feels. He is still waking up around 7:30am and falling back asleep around 10:30am after the first steroid dose. He did not eat breakfast or dinner but managed a bit more than just a piece of string cheese for lunch. What did him in for the afternoon was an attempt to go to play therapy after lunch. Keegan got very excited to go to “Ms. Kristin’s playroom”, but he only managed about 15-20 minutes of play before he asked to be carried back to his room. Then, he proceeded to take his second nap until 5pm. A brief visit from Audrey (our first since Sunday), and he was asking to go to sleep again by 7:15pm. Remember that this is our boy who dropped his nap almost two years ago!
Anyway, no change in the plan for now. We are praying for good rest tonight and better energy and attitude tomorrow. We should have a phone conference with the doctor in Cincinnati on Monday to flush out what they are thinking based off of everything we have sent so far. We also emailed our team in Boston to see if they had any advice; hoping to hear from them Monday too. Thank you once again for supporting us on this journey.
