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journals/2019_12_30.org

Monday, 12/30/2019

ID
d30365e3-3fbe-4587-a469-6256a000c200

Tasks

DONE Catching up on the internet

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DONE Journaling

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DONE Lunch

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DONE Taking care of Nabby

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DONE Reading Terms of Endearment

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DONE Reading Debt

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DONE Setting up a mailman server for Castine

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Journal

hospitalnabby@family

It's fascinating to watch the ice flows increase on the Penobscot River as the

days get colder. They moved Nabby down to the ICU on Saturday, mostly so she

could receive high flow oxygen. The last two days have been difficult. She didn't

improve much despite all the attention, and an ultra sound revealed that she had

fluid building up in her abdomen.

Dr. Payne noted that this was likely, but it was still sad to hear. Saturday

afternoon they did a short procedure to put a drain in her right side so the

fluid could come out. The drain is still there, though the amount of fluid was

greatest when they first put it in. Over 100ml initially, and a total of about

130 or 140ml so far.

Nabby woke up this morning looking and acting much better than the last few

days. I slept in a bit, but I was awake enough to hear Kirk, our ICU nurse,

commenting on how active she was. She also has begun peeing a lot. This is good

because she's been retaining a lot of liquid since they started her on an IV.

All in all, it's been a more positive day than we've had in a while. Our spirits

are higher than they've been, though it's hard to say they've ever been so low.

Even in the depth of Nabby's illness, Emma and I have managed to remember to

laugh and not stay negative for too long. We finished Game of Thrones on

Saturday, and watched the Mission Impossible movie we missed in the theaters

last year. Emma's been out running errands, and we're just taking things day by

day.

---

The pediatric surgeon, Angela Brown(?) came in to talk to us this morning about her

recommendations. Interestingly, while Dr. Payne said the surgical route

sometimes leads to shorter hospital stays, Dr. Brown said in a study about 10

years ago outcomes were found to be almost identical, including hospitalization

time, regardless of whether the use of targeted medication via a chest tube or

arthroscopic surgery was used. I found that disagreement to be really interesting.

---

Reading about Larry McMurtry to figure out the order of Lonesome Dove books, his

wikipedia entry notes that he didn't have a lot of books growing up, but that

his extended family would often sit on the porch and tell stories. I was

thinking about how my family is not a big story telling family. Part of why I'm

excited about trying DnD with Gabe is the opportunity to learn about

storytelling. Role-playing is effective crafting a collaborative story, and I've

already found a lot of fun in guiding through various parts of the first DnD

campaign. One thing I need to work on is keeping the story in my head and

building things around it that are compelling. Emma's dad is a great story teller.

---

Everything was going pretty well today but Nabby spiked a fever above 40C today.

That was alarming enough that Dr. Payne wants to do more blood work to see if

there's something they're missing. Emma noted, before she left for Castine for

the afternoon, that the days seem to start on a high note and then slowly wear

you down. So true.

Still, she's more like herself today than not, fever aside. She's playing with

her IV today, which is both alarming and delightful. I haven't seen Nabby play

in days.

It's delightful to watch her try to work around having one hand wrapped up in

tape with the IV in it. She's playing with a pouch, putting the cap on and off.

---

After having a better afternoon, Nabby's fever returned tonight, up around 104,

which is not great. Emma returned from a trip to Castine to find her sleeping in

my arms, but restless and not damn happy, a stark contrast from how she was with

me while she was gone.

Also, it turns out that while I was nervous about why we were being moved back

up to the PICU, I needn't have been. Kirk explained it to me in hushed tones

that when there was only one kid (Nabby) who needed the PICU, they couldn't

justify staffing the whole wing. There are now two other kids that need ICU

support, so they could justify opening it. That seemed perfectly reasonable to

me, but Kirk said you'd be surprised how upset some people get about issues like

that. Sometimes I wonder how much people enjoy working with our family, who are

fairly well adjusted and not terribly demanding. The only real issue is the

anti-vaccination perspective, but most folks get over that pretty quickly.

It's snowing outside right now. The storm is supposed to bring a few inches

overnight and then turn to rain in the morning. I wonder if we're gonna have

cold weather this winter, or if it's just going to go up and down all season.

---

I also finally managed to get a mailing list server setup properly with mailman

by bolting it onto the side of a mail-in-a-box installation. I need to document

what I did now so I can tear servers down and put them back up too.

Report

#+BEGIN: clocktable :scope file :maxlevel 3 :formula % :compact t :tags t

#+CAPTION: Clock summary at

| Tags | Headline | Time | % |

|------+-----------------------------------------------+---------+-------|

| | *Total time* | *10:25* | 100.0 |

|------+-----------------------------------------------+---------+-------|

| | Monday, 12/30/2019 | 10:25 | 100.0 |

| | \_ Tasks | 10:25 | 100.0 |

| | \_ Catching up on the internet | 0:17 | 2.7 |

| | \_ Journaling | 0:02 | 0.3 |

| | \_ Lunch | 0:49 | 7.8 |

| | \_ Taking care of Nabby | 4:42 | 45.1 |

| | \_ Reading Terms of Endearment | 1:25 | 13.6 |

| | \_ Reading Debt | 1:20 | 12.8 |

| | \_ Setting up a mailman server for Castine | 1:50 | 17.6 |

#+END: