Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

7 Quick Takes: December 6

on December 6, 2013

What? She’s posting during the week? Luckily it’s Friday which means I can sit back and enjoy a quick takes post, about 7 random things, none of which have to make any sense or complete an entire post on their own.

Linking up with Conversion Diary for this one. Head over there to read more link ups.

1.  Jeremy and I took some more recent pictures of Agnes this week. It was difficult because she’s sickly and she often looks kind of crummy. But we managed to snag a pretty good one:

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2. Jeremy and I are scheduled to complete our 24-hour care tomorrow from 8am Saturday to 8am Sunday. We still aren’t quite sure who will be sleeping when during the time since one of us has to be “on” at all times–no help from nurses or doctors. This is the last thing we have to do to get ready for Agnes to come home. My dad is finishing some rewiring in the house to accommodate life support machines, and the home care nurses are completing their training. Agnes is tentatively scheduled to come home Wednesday.

3. I say tentative because she must be in medically stable condition. She has been set on the ventilator for the required two-week time frame, so there’s no problem with that. However, she has lately presented with some distention in her belly that is not resolving despite the numerous strategies employed by the intensive care doctors. They tried draining her stomach contents with and without suction to remove excess gas. They took a bunch of tests (x-ray, ultrasound, echocardiogram) to rule out all the possible causes. There is only one obvious cause left: her shunt. Accursed shunt. So the plan is to give Agnes a dose of diuretic to see if that helps, and watch her closely over the weekend. The neurosurgeon is okay with her carrying on if her belly doesn’t get any bigger, but if it does, he will want to externalize her shunt. Again. And send away for cultures of Cerebral-Spinal Fluid. Again. And wait a few days then reinternalize the shunt. Again. Only this time, he would thread the catheter into Agnes’ heart rather than into her abdomen, which is absolutely the very final option because they hate to do VA shunts, especially on trach kids. It will have to be revised in six months because they can’t put extra tubing like they can for VP shunts. Plus trach kids have a 10% risk of infection with VA shunts. 10 percent. Holy freaking cow. So that’s not awesome and it all depends on whether or not Agnes’ girth continues to measure 47 cm or less.

4. With the help of all our friends and family and our church, and everyone who made a gift through our website, wee are going to buy  this van for Agnes:

It’s a 2004 Nissan Quest with 76 thousand miles. We tested it and it drives very well, and the dealership recently had a ton of work done on its brakes. It doesn’t make any weird sounds when running, which is already better than the cars we drive now. There is a ton of room inside for all of Agnes’ medical equipment! We can’t thank you all enough for your gifts and support to help make this happen!

5. I’m having a hard time thinking of anything to write for takes 5 and 6. Well, I cooked macaroni and cheese for dinner tonight from The New Best Recipe cookbook. I love America’s Test Kitchen with all my heart, except when they tell me that the way I’ve always made a certain recipe is total crap. Or when they tell me that an ingredient I always use is not even fit for dogs to eat. But other than that, I love America’s Test Kitchen.

6. Can someone please consider getting this for Agnes’ Christmas present? kthxby

7. Okay, finally, I wanted to put the pictures from our trip on the Polar Express last because there are quite a few. The Palliative Care Team at Akron Children’s Hospital gifted our family with tickets for the Cuyahoga Valley Scenic Railroad Polar Express. We took Stephen and he had a grand time. If you ask him if he had fun riding the train, he replies “Yeah! Goldfish crackers. Gummy Bears.” We bought those snacks from the cafe car before the train left the station. I guess that is more interesting than the elves, or Christmas carols, or the “North Pole,” or meeting Santa. Whatever. Goldfish crackers. Gummy bears.

walking to our car to board.

walking to our car to board.

Jeremy was probably more excited than Stephen to ride the train. Name me a boy who doesn't adore trains!

Jeremy was probably more excited than Stephen to ride the train. Name me a boy who doesn’t adore trains!

We're happy!

We’re happy!

At the "North Pole," aka Peninsula, Ohio. A bunch of volunteers stood along the track, dressed as elves.

At the “North Pole,” aka Peninsula, Ohio. A bunch of volunteers stood along the track, dressed as elves.

Stephen met Santa and made strange faces at him. Weird kid.

Stephen met Santa and made strange faces at him. Weird kid.

Every kid got a "bell from Santa's sleigh," like in the Polar Express book.

Every kid got a “bell from Santa’s sleigh,” like in the Polar Express book.

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3 responses to “7 Quick Takes: December 6

  1. Kathy Schwager says:

    I’d love to get the shirt for Agnes! What size?

  2. Hannah says:

    Good luck on getting her home!

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