We are settled into room 433 at Egleston (I had been spelling it wrong before). The clinical staff here seems top notch, and I find I’m really appreciating the collaberative environment of a teaching hospital. The facilities themselves are under renovation, and our room is…rather dated. The cafeteria is great, but the kids areas are pretty much just functional. There is also no activity room on this floor because it’s just been redone and the varnish is still drying on the floor.
Meredith is going to have a kidney biopsy tomorrow. There are some unusual test results that have caused her nephrologist to recommend the procedure, and after discussion, Lars and I agreed to proceed. The biopsy will provide confirmation on HSP (which can be seen microscopically) and will rule out or possibly confirm other issues. This is a general aneasthetic (sp?) procedure and she’ll be taken upstairs about 12:30 or so.
Her GI doc wants to hold off on doing a Upper GI Scope until after the renal results are back, so at least nothing invasive in that regard.
Her primary pediatrician is perfect – everything I could have asked for in a doctor. She’s keen to gather all the information, develop a plan, and not treat this like ordinary HSP – because clearly it’s not. She’s also a parent of kids of similar age, and I appreciate the empathy that brings.
Lucy is our hospital angel. She’s with what CHOA calls “Child Life” and her role is to advocate for Meredith. She explains procedures to Meredith, she answers questions that Lars and I may not know, and basically spends her time making sure Meri isn’t frightened or confused. She was absolutely brillitant in explaining what the biopsy is to Meredith, how it will work etc. She had a book with drawings of kidneys and pictures of the procedure room. She reassured Meredith about things that would never have even occurred to me (“you won’t look any different after your biopsy”). At dinner Meredith told me how much she likes Lucy because Lucy helps her feel a lot better. Lucy even offered to go with Meredith to her biopsy and stay with her during the procedure. She is truly a God-send for us.
As we were walking back from dinner, we were talking about superheros (typical conversational material in our house lately) and Meri was commenting on different superhero powers…invisibility, ability fly or swim underwater. I asked her “If you could pick only one superpower, what would it be?”. She thought for a minute and said “I would pick never getting sick again.”
Me too, baby, me too.