Elanor’s Weekend (CarePages Update)

Sorry for the lack of update yesterday. The MGH server was down and we were without internet…which is seriously unfun, as there is are a limited number of ways you can amuse yourself in a hospital room.

Yesterday’s big news is that Elanor was moved from the PICU to a regular pediatric floor. It’s a huge step in the right direction and we’re even starting to talk about discharge dates…tentatively she’ll be able to go home somewhere between Tuesday 12/2 and Thursday 12/4. Her antibiotics course will end on 12/1 and then they’ll want somewhere between 24 and 48 hours of observation post-antibiotics before they sign off on her going home.

Elanor’s new room is on the 17th floor of MGH with a gorgeous view of the Charles River. I took pictures today and we’ll post them in the next few days. Her bed is the one by the window, and she does not currently have a roommate. As it’s a holiday week, we’re kind of hoping things will stay quiet and that she won’t get one, although of course it’s always a possibility.

The Pediatric floor is very different from the PICU. The one major similarity is that both floor are locked and you have to be buzzed in after identifying yourself and who you’re there to see, just like on the baby floors at Beth Israel. Where Elanor is still so tiny, I definitely find it reassuring that only people who belong on the floor will be there. Other than that, each room has a chair that unfolds into a sleep bed instead of the couch/bed combo in the PICU…although we requested a cot as our backs both cringed in pain at the idea of the sleep chair and Ravi’s limited experience with one at BI. The nurses are still wonderful, but they’re definitely less attentive/busier than the ones upstairs…partially because they have more patients and partially the floor just has a different vibe…at any rate, it takes longer to get things like her milk and they check in on her less.

It’s odd, really, because the PICU rooms felt like little insular worlds, while the Pediatric room feels like part of a giant institution (which actually both are, but I hope I’m explaining it well).

Regardless, the place we want Elanor is home, of course.

Elanor had been feeding so well yesterday that when she yanked her feeding tube out of her nose, we asked if it could just be out permanently. The nurse said okay, and for a while it seemed like it would work. But unfortunately, her feeds fell off again last night and it had to be reinserted. In the short term, Elanor had to have a restraint put on her arm to keep her hand off the tube, but today I brought in a few outfits from home that have the built in mittens, and we were able to remove the restraint.

Elanor’s blood pressure also continues to be an issue. Her blood pressure medication had been twice a day, and they raised the dose and changed it to thrice daily, but it just doesn’t seem to be doing the job well enough. Currently the doctors are discussing if they want to change her to what is called an ACE inhibitor drug in hopes that that type of drug might do a better job of controlling her blood pressure.

The other thing of concern is that this morning when the dressing on her central line was changed, they found a dime sized green colored seepage. This could signal the beginning of an infection. However, the doctor said that the site was not hard, red, or hot, and visually looked fine, so they are just going to keep an eye on it in the short run and if it seems like the seepage is continuing, they’ll bring in surgery to take a look at it and help decide what to do next.

Neurology dropped by today and said that the ultrasound from Friday looked good-no change, which remains the best course of action and that they will probably repeat the head ultrasound on Tuesday or Wednesday with a follow up MRI on Monday 12/1 so that they have final imaging before she is discharged. They also will be following her after her discharge and working with teams like Hematology in what is called the “Stroke Clinic” with Elanor as an outpatient.

Today Elanor is watching the Patriots/Dolphins game with her Dad and her Grandfather. Daddy is rooting for the Dolphins. Dada (Gujarati for Grandfather) is rooting for the Patriots. The last I saw of Elanor, before heading back to the hotel to sleep, she had wisely chosen to be asleep and thus immune to both sides.

Like last weekend, this one is quiet.

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