· Normal is a dryer setting.


Getting her stitches out

Yesterday Namine had an appointment with ENT to get the stitches in her neck removed. Jess took her to the clinic building, not the hospital. Namine is old enough that we can tell her what’s going on; sometimes she handles it well, and sometimes not. Well, this was a not day. I think the recent business with her feet has made her more afraid of doctors.

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A quick story

I am alone. My best friend, whom I am fortunate enough to have married, is asleep, perhaps dreaming of punching a gastroenterologist in the face. My little love is asleep, oxygenation high enough to justify leaving the mask off for the night. I alone am awake, thinking thoughts known only to me and God, though surely I am the only one who cares. I’m sure most of the normies have gone to bed as well.

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GI clinic appointment

The idea of Namine being tube-free is, for lack of a better word, epic. Namine hasn’t used her g-tube in quite a while – months, now – so it makes sense to get rid of it. With it still in, we’re still constantly battling pain, granulation, potential infection (being basically an open wound, like the trach in that regard), sores, rashes, and all-around discomfort. I wonder how much of her stomach, intestinal, and bowel issues are related to her just having the g-tube, as well. Now, if we can just get there. The clinic visit went… badly.

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Much news

Happy horse day! Today Namine had equestrian therapy, and Jess said she enjoyed it quite a bit. I’m told the benefits will far outweigh her smelling like a horse. I kid, I kid. But on to other serious matters. Namine also had a cardiology appointment, and I got a call from pulmonology about her decannulation. We finally have a set date, and it’s coming up soon. More after the jump!

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From vacation to decannulation

It’s always hard to get back into the swing of the daily routine after a vacation, even a small one like a 3-day weekend. (Of course, the nature of Namine’s condition and medication needs still require a semblance of routine, even on vacation. But it was still nice to relax and to be able to do things at our own pace.) Especially when you have to get up early the next morning for an early clinic visit. But this one is well worth the lost sleep: a trach/vent clinic, but not just any – today we start down the road for Namine’s decannulation.

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Namine’s trach/vent clinic visit

Today is the last day that Namine has to wear arm restraints! Yay! Nothing really much to report from Namine’s trach/vent clinic visit. Last time, they found that she had an infection in her right ear. That’s gone now. We should find out soon if we can get her decannulated this summer. Speaking of, we…

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