NIH Day 5

We had a rough 24 hours of pain and nausea that we haven’t quite been able to keep under control, and as a result not much sleep.  Some good news is that Jane was moved out of the ICU mid-morning to a regular hospital room.  She’s had two of the four IVs removed and has gotten up out of bed several times.  Even though she’s been given permission to eat she doesn’t have much appetite.  She’s been able to sleep a bit this afternoon, but still in more pain than we’d like.  The doctor here tonight is getting a little more aggressive with her pain medications.  I saw Jane smile tonight for the first time since the surgery when the doctor told her, “If you’re in too much pain tonight, then I’m not doing my job.”

 

Our poor girl.
(The stuffed animal on her belly is actually also a microwaveable heating pad,
a gift from Grandma Agnes.)

Mid-afternoon we learned that our NF team was thinking about another full body MRI for Jane!  I almost lost it.  Our poor kiddo can barely get out of bed from pain and nausea, and they want her to lie in an MRI scanner again for an hour-plus??  Ugh!  In general, our NF team would like Jane to have a full body scan every 2 years now so we aren’t surprised by any new tumors.  Her last one was in September 2019, and since we might not be back at NIH for another 6-9 months, the team was thinking we could perform another full body scan before we leave.  However, once they saw how miserable Jane was, they reconsidered.  The plan now is to see how Jane feels over the next day or two.  If it still feels too overwhelming to have the MRI during this visit, we can either have the full body scan at home, or just wait a little longer and have it the next time we’re back at NIH.

I am overtired and it’s been a stressful week, so as you can imagine I’m feeling a bit emotional.  We had just gotten out of the ICU and heard about the possibility of another MRI when one of the hospital chaplains, a rabbi, stopped in our room and asked if we had any "spiritual needs".  I started by saying "no" but ended up crying to him about Jane and even showing him the picture that I carry around of my beloved, late Aunt Anne, a Catholic nun.  The chaplain was so kind to me that now I want to convert to Judaism :)  

Coincidentally, this afternoon, one of my favorite cousins (no, not that one—the other one; the Stapleton Clan knows who I’m talking about) emailed me about the powers of both science and prayer that made me smile.  He wrote, “As Cardinal Cushing told the great Celtics coach Red Auerbach, making the sign of the cross before you take your free throws really helps, especially if you are a good free throw shooter.”

We’re hoping for a better night tonight. 

Thank you to all of you who are reminding me to take care of myself, too <3