What follows is the update emailed to our friends and family, regarding today’s very long, long, long experience at the hospital.
First, I hope this message finds you all safe, healthy, and not together. As somebody watching health professionals scramble to prepare and accommodate the influx of Covid-19 patients, I urge you to follow every bit of advice around social distancing. The hospital is a weird place to be under the shadow of the looming pandemic.
Now, onto the business of Mike’s surgery.
Mike went in for surgery at 5:30 this morning without a hitch. The procedure began at 9:13, and they extubated him around 1:45, and by 3pm he was talking, joking, and even singing some Rolling Stones to the doctors. We had a wonderful visit from a friend who works at the hospital, who he was pretty sure was a hallucination. He’s been in and out of consciousness ever since, but not in a too-much-pain-to-focus way. It seems that four surgeries in, with all of the hindsight of repetition, with his doctors genuinely listening to our experiences and concerns, and without the hindrance of medical trial requirements, we have figured out how to have a nearly flawless brain surgery.
Mike’s pain is managed. His nausea is nonexistent. He’s able to sleep, he’s comfortable, all of his meds are being dispensed correctly (still surprisingly something I had to put some extra elbow grease into), they’ve even taken him for his MRI early (he’s there now), so the only thing he’ll have to do from about 10pm local time until shift change in the morning is his neurological exams, accepting IV medications and fluids, and resting. The only concern I have for him now is his blood pressure, which is a little bit low, probably a result of the anesthesia. We’ll be monitoring it carefully all night.
As for the surgery itself, it went very well. The surgeon estimates he removed 95-99% of the large mass and did not go after the smaller one hiding behind it, nor the other tiny spots that show up on MRI. These will be attacked via his other treatments– chemo and radiation and even perhaps going back to Optune. Mike’s surgery was assisted by a plastic surgeon who not only closed up his skin with particular care to avoid the delays in healing from seven months ago, but bandaged him up like an Asian pear with a top knot. He looks remarkably cuddly, as opposed to his last surgery, where his wound was livid and bare for quite some time. It’s amazing how different some parts of this are, no matter how routine other parts are starting to feel.
That said, it is truly bizarre to be doing this in the midst of Covid-19, and the repercussions of the timing are significant. The children are not allowed anywhere inside the hospital. Guests have been restricted to a single designated person (hello!), and there is talk of even more restrictions on that subject. Already, other hospitals in Chicago and the surrounding area have banned ALL visitors, aside from a single parent in NICUs. Should they implement that policy here, I have a feeling I’ll be able to get myself a dispensation to stay, but then I *really* won’t be able to leave until he does. As it is, I am sleeping at the hospital, and I don’t expect to see the children in person until Mike is discharged. I cannot tell you how grateful I am to have Mike’s parents, my parents, Miriam and her family, and so many friends coming together to help us through this time. I also cannot adequately express my gratitude for technology that is allowing the children to participate in activities with their friends, do their school work, and giving me the chance to speak face-to-face with them a few times a day. It’s not the kind of social distancing I want to be doing, but it’s exactly the kind that will keep Mike safe.
THAT said, the folks at the hospital are not messing around when it comes to this virus, and neither should you. I am taking precautions that when I came up with them in the comfort of my own home seemed a bit extreme, and now are essentially the only way I am able to be with Mike. Things like bringing extra clothes to change into and out of every time I leave the hospital, keeping my hair tied up and covered, and carrying hand sanitizer with me everywhere. (Shout out to the lady from my local Facebook group who heard me complain of my plight and GAVE me a full pint-sized bottle of hand sanitizer. Thank you, kind stranger.)
We are taking every precaution not to expose Mike to this virus, which according to some sources inside the hospital is already causing a lot of slow-downs in some of the inner workings of the hospital (the labs are allegedly being overrun with test kids, postponing other less critical tasks), and doctors are being forbidden from traveling outside their “zones,” meaning Mike’s oncologist will be unable to visit him in his hospital room, as has always been the case.
So far it appears Mike has not regained any function on his left side, but it already appears that he HAS regained some sensation, so I remain incredibly optimistic about what the next few days will bring!
I will update again tomorrow when I am able, hopefully from beyond the Neuro-ICU.
Stay healthy out there.
With so much love,
Lea et. al.
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Read about brain surgery days here: Thoughts from the Waiting Room while my Husband has Brain Surgery
Read my most recent post here: No Rest for the Weary, or, Brain Surgery, Round 4, Fight!
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