I will let Dr. Kingsbury give the recap of today's eye appt:
I just got off the phone with Dr. Goodman and she seemed encouraged by the drop in inflammation, but it is still present. She's inclined to go ahead with the methylpred infusions. I believe she will be calling you to discuss the plans.
I also just got off the phone with the nursing staff in the pediatric day treatment unit and they could perform those infusions next Tues, Wed, & Thursday. Monday seemed a bit busy for them. I see that you have an appointment with me at 11 AM (on Tues) and they would take her immediately after we finish the appointment. How does that sound?
I will be in a mandatory training course all day tomorrow, but should be able to check emails once or twice during the day. I will be in the office on Friday. Based upon Dr. Goodman's assessment, I think we can stick with our Tuesday scheduled appointment.
Hope this works for you.
Hi Dr. Kingsbury,
I am so glad Dr. Goodman caught you today! Yes, we felt a little encouraged, but we had that slight raise of the eyebrow indicating “how good do you think it really is & … dontcha think its been a long road to get to just a bit better?” You know?! So none of us were jumping up and down & Ryan & I didn’t want to have a pre-mature celebration, but at least it wasn’t the same or worse. SO! There was our silver lining I guess.
So yes, we agree with you & Dr. Goodman & it sounds good moving forward with the methylprednisolone. We agree and don’t want to be too optimistic, but hope that since we have seen improvement with the increased oral pred forte, that maybe this IV of methylpred will be the kicker, and maybe the remicade wont be needed? Is that too optimistic thinking? You can tell me if we shouldn’t even think that far ahead.
Thank you for setting that up for next Tues/Wed/Thurs. We will meet you at our scheduled 11am appointment on Tuesday & go from there. We have an ongoing Wednesday @ 415 eye appt w/ Dr. Goodman. Do you think we should keep that for the 30th?
Any idea on overall timing to book out for each of these treatments? You mentioned the actual pulsing of methylpred takes 30 minutes, but is there time spent after for observation of any kind? Is she allowed to eat normal before coming in? And this will be outpatient each day, you don’t think staying at the hospital for observations of possible side-affects is necessary? One more question of the methylpred before we see you on Tues: You said that remicade is pretty immediate acting for results, what’s the timing for results with IV methylpred?
Ryan & I will both be there on Tues & Wed, Thursday he has to travel to SFO, so knowing all of these details ahead of time will help me in planning for the other two sisters who will be in preschool/1st grade.
Thank you much!! We appreciate it! Have a good day of training!
SO! Not GREAT but we werent expeciting great. lowered inflammation AT all is more than i expected. So that's good. I didnt leave ANGRY like we have in the past. That's good. I dont know what to expect with what this time in the hospital iwll look like or what it will be like once we are home... so I get a little sick to my stomach when i look at my calendar & see that I have a PTA board & general meeting on Tuesday night (her 1st treatment) & then have plans to head out for the weekend with the high school girlfriends on Friday - Sun. I just have no clue of what this is going to look like feeling good about ANY events going on outside of those 3 days of treatment & really dont know what to do about it. Maybe Kingsbury's response will help me to understand what i will feel comforatble in doing/not doing.
I hope that doesnt sound selfish that i am worried about my commitments for the week, because this isnt about me, its about trying to figure out how to be fully focussed on Charlotte. But i dont want to be unnecessarily overly obsessive about the situation... & yet this isnt non-chalant. I dont know how you are supposed to feel but i feel like i am babbling, so i am going to post & head to bed!
Happy Birthday Mom :) Love you & miss you oh so much!