Elanor’s Wednesday (CarePages Update)

Morning rounds are taking progressively less time each day, which is encouraging. There really wasn’t anything new to talk about in terms of what’s going on with her at the second…most of our time is being spent on discussing follow up care and appointments.

The doctors have basically all said that they’d like Ravi to stay away as long as he’s still feeling sick, so I’m going to say again “Thank god for grandparents.” However, hon, if you’re feeling better, put on a mask and get your butt over here (just kidding).

Elanor’s MRI has been moved up to today. Her head ultrasound came back as stable, but they want to get it done before she’s out of the hospital, which is fine by us, as that’s one less appointment she’ll have to come back for after being released.

We’re still thinking Friday for her release, as her blood pressures were fairly stable last night.

As an outpatient, she’ll be following up with a LOT of departments. So far we’ll be following up with the Kidney Doctors (who are in charge of her blood pressure), the Liver Doctors (as her Liver numbers haven’t returned to normal yet), the Heart Doctors (she has a hole in her heart that ALL babies have, but they want to follow her just to make sure it closes before she’s 5…I think maybe once a year), and Neurology because of the brain bleed. She’ll also be working with Early Intervention and possibly a Physical Therapist to make sure she’s developing physically the way she should and to help her hit her milestones. She’ll also be seeing a lot of her Pediatrician from what it sounds like.

Today Elanor had an MRI. I got to go downstairs with her and I watched them get her ready, which involved a LOT of blankets to stabilize her little head in a giant cradle meant for much larger heads. They also put in teeny little earplugs and these teeny headphones to protect her from the noise of the machine. She was such a good little girl…she slept through the whole thing! We should get the results later today, but yesterday’s ultrasound showed no change so we’re not expecting anything new.

Elanor also got a roommate today. Initially they were going to put a two year old in the room with her, and I had to advocate for us. I had been told by the staff in the PICU that she wouldn’t ever be put with an older child (like older than 1 or so) and a two year old sounded like a BAD idea. The nurses assured me the two year old was “clean” and I argued back that she’s still immuno-compromised regardless of the antibiotics as she has only gotten her Hepatitis B vaccine and no others. We went back and forth as I made my other points (that she still wakes up multiple times a night and that would be very disruptive for a two year old, etc). Finally they moved a 5 week old in with us, which is a much better option. He is supposed to be going home today, so I hope that doesn’t mean I’m going to have to go through all this again at some point tonight.

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