Laughing, Weeping, Living

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

7 Quick Takes: October 25

on October 25, 2013

Hi everyone. This week the 7 Quick Takes linkup is being hosted at Clan Donaldson. So I’m joining in at that fun blog.

1. The great city of Cuyahoga Falls, OH–as well as many other cities in the area here–have a scheduled date and time for Trick Or Treat. Cuyahoga Falls is trick or treat-ing tomorrow from 6 to 8pm. I think it’s great there is a specific time and date. That means we don’t have to guess who is going to be ready when and hang out with our bowl of candy from 4pm to who-even-knows pm on Thursday night October 31. When we lived in Billings, there were trick or treaters really early in the afternoon. I remember specifically asking Jeremy, “when does trick or treat start?” and he looked at me like I was from a different planet. I guess I am from a different planet: the planet Northeast Ohio where the cities are kind and smart enough to schedule trick or treat. I know I would rather not take my kid out on a weeknight. Or conversely, show up at someone’s house at 5pm and they don’t even have their candy ready yet. That would be embarrassing!

2. On a similar note, Stephen’s adorable penguin costume is ready! I bought a black hoodie sweater, black sweat pants, some white flannel fabric, and a few sheets of orange craft foam. I sewed a white “tummy” to the front of the sweater, made feet from the foam that will tie around Stephen’s ankles with elastic, and I sewed eyes and a foam beak to the hood of the sweater. The “tummy” is pretty secure; I made sure it was quality stitched so he can wear a cute animal sweater after Halloween. I’m not sure about the eyes staying or not; I might add little ears so his sweater is too cute to even bear. Haha. “Bear.” Get it? Don’t worry, I’ll take pictures!

3. Speaking of Stephen, he has a fun new game to play in the bath. It’s called “monkey pack” and this is how you do it: 1. slap a washcloth on the inside wall of the tub. 2. layer on some foam bath toy monkeys. [optional 2b. count the monkeys]. 3. slap a second washcloth on top of the monkeys. 4. fold up the monkey pack and stuff it in a little bath toy bucket. 5. announce “monkey pack!” 6. Repeat.

4. Agnes is officially coming home on Monday! We are pretty excited. The home nursing agency was not able to coordinate our private duty nurses over the weekend, which is fine and pretty much what I was expecting. Agnes moved up from the PICU and now she is on the floor where all the trach kids go who don’t require intensive care. I will miss the PICU staff! I really like the nurse practitioners down there especially. The staff on the floor is great too, but it is a lot busier and the nurses all have more patients to care for. In the PICU, nurses only ever have two patients, so it’s a difference. Plus, our PICU room was nice and big with large windows. Sigh. At least it’s only for a couple days.

5. I just want to say a bit about the power of prayer. One week ago, Jeremy and I had a big meeting with the PICU doctor, the pulmonologist, some Palliative Care people, and a PICU social worker about Agnes’ long term care, and what the plan was for her treatment. No one could say whether she would depend on a ventilator or not. They had not yet started weaning the vent settings. Two weeks ago, Agnes was completely dependent on a ventilator, she was barely breathing on her own, she required regular doses of sedative because when she was awake, she fought the ventilator and became distressed. We were seriously talking about how we would deal with a baby on a ventilator, and planning our lives around a couple months of hospital time. Three weeks ago, Agnes was close to death. I mean it. They couldn’t give her enough oxygen; they couldn’t sedate her enough; they couldn’t feed her stomach food.

And today she was breathing totally on her own, with exactly the same equipment and oxygen and medicine (except for one med) she had when she was at home last month. She was alert, looking around her room, reacting to me and to Stephen, responding well to occupational therapy, tolerating her bolus feeds, maintaining a decent oxygen saturation.

Of course the doctors and nurses were working hard, but everyone praying for Agnes was working harder! Someone told me today that she honestly didn’t believe Agnes could kick the vent this time. Agnes did kick the vent, with the help of your intercession! Yesterday Jeremy and I prayed our rosary for the intention that Agnes would come home soon. That same afternoon the NP told us she wanted to discharge Agnes today. Prayer works. Miracles are real. Agnes is a miracle and a living example of the power of prayer.

6. Now to totally change the subject, my dad brought home the most enormous head of cabbage I have ever seen. ever. I have been intending to make Ukrainian style cabbage rolls with some of the cabbage, but I keep missing my opportunity. Jeremy offered to make some coleslaw, but there are still 4 more pounds of cabbage to deal with. Does anyone have any good ideas?

7. Stephen has thrown fewer tantrums this week, or at least, I have paid attention to fewer tantrums. I’m also trying something new: I ask him what he wants to eat for dinner/breakfast. So far he hasn’t requested anything objectionable. Yesterday he wanted “cereal” so I asked, “oatmeal or cheerios?” and you can guess what he wanted. This morning he wanted “jelly. peanut butter and jelly.” but he asked for it in a cute toddler voice that I can not transliterate. I am still so thankful he likes eggs again, and we have started giving him a gummy vitamin each day. He always requests “more” vitamin. I’m totally jealous of his vitamins.

Okay, so not very quick takes, but still, I hope interesting takes. Head over to Clan Donaldson for more!

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One response to “7 Quick Takes: October 25

  1. JeneaSwainston says:

    This is all such great news! Agnes is such a blessing in my life! Her situation has made me come to my knees many times in the past several months. I so wish I lived closer or had unlimited $$ to fly out and see all of you, but I would rather God answer the prayers for Agnes to become healthier and stronger!
    I know this has been a roller coaster for you and for Jeremy, as well as Agnes. I pray that now Agnes will feel better and you will all be able to relax a bit!

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