Aw, poor lovey boy. May they get to annoy each other soonest.

He ended up going to sleep in Grace's bed. He misses her.

Oh, my heart.

It's sort of funny because when she is at the hospital, he's worried and scared but also he gets one of us completely. The kids never sleep in our beds, but he gets to until the other mom comes home so he is in heaven but guilty feeling.

Being a twin must be complex.

One more thought before I go to bed. And I'd blog this if I ever had a nondefunct blog. But.

When Grace first got her trache (on my 35th birthday!) I thought of it as a thing to get through. In my brain, I held the idea that if we could just get the trache out then she'd be better and some of our biggest issues and worries would evaporate.

I also, naively it seems, believed that they'd pull the trache and there would be a day or two of worry, but that it was just be....easy.

But no.

Surgery, now, is particularly harrowing because she has no permanently open airway. And she has to continually have surgery because, in her ENTs words, they are worried about sloppy margins and her trachea collapsing in on itself. Instead of fewer surgeries, we now have more in the short term. She has to go back to surgery on July 1 and then again on July 29th, or so.

Her ENT does not like the idea of us driving across country. She would prefer that we avoid Idaho because, in her words, there are no good doctors there because it's too rural. She said the closest pediatric ENT she trusts is in Denver, so Colorado is okay. Let's not even talk of South Dakota; she'd prefer we hurry through straight to Minnesota where there is at least proximity to Mayo. She is at least fine with us staying in Ohio (Cleveland Clinic meets her criteria). I know that it's parochialism, but it's also scary to think about in light of today's incident.

So yes. OF COURSE removing the trache is not the end that I hoped it was. In fact, it's merely the beginning of another process.

But look at this little silly face: [link] FWIW, that's a donut they rest her head in when they perform surgeries, not something for hemorrhoids.

Aw, poor Gracie. Someday this will all be a distant memory!

I have to pack for my trip I leave on tomorrow--one day of travel, one day of work, driving from Michigan to Indianapolis (I hate driving, and this is going to be 5-6 hours, then I have to drive BACK! Stupid lack of good transport alternatives, and expensive flights!) and then spending three days with my family and then driving/flying back. Eek. I'm so bad at packing when combining work and personal trips. I have it DOWN when it comes to work stuff--I can pack super quick and don't often forget anything. But personal trips? No. And when it's BOTH? Eek.

I often use a metal thing to stir a pan without a potholder, because it's not hot when I first stick it in, and then leave it in and go to stir it again without a potholder even though it has now heated up.

I don't have many metal utensils because all my pans are non-stick, pretty much. So that saves me from that danger.

That makes so much sense, Kat - both your "if we can just get her trache out it will be better" assumptions (that's what everyone thinks with a big Thing and it's rarely true) and the reality of it. Somehow the impact on whether you can travel is . . . I'm having a hard time wrapping my head around it.

Yeah, NSM metal utensils for cooking, more like "stick a spoon in it to taste it and stir it around and then..."

Aw, such sweet kids! I love that he misses her so much. And yeah, Fault in our Stars looks too sad for Franny, too. She'd be a big pile of weepy.

I know that it's parochialism, but it's also scary to think about in light of today's incident.

Yes and no. It's useful to remember how ginormous this country is and how unequal the distribution of medical care.

Oh Gracie. Breathing is a good thing. And hopefully all the short term surgeries will result in longer term stability.

Some crap is going down between K-Bug, KCD, and B. I don't even know the cause but KCD pulled me into it tonight with a text after 10pm and then stopped responding to my questions. Dude, I know you suck at communication but this is beyond even for you. Tomorrow is going to suck mightily. Oh and tomorrow is KCD and B's anniversary. Oy and vey.

Yes and no. It's useful to remember how ginormous this country is and how unequal the distribution of medical care.

Especially in that part of the country. There's just less of everything there. When we were in WY, I had Ben in a 40-bed hospital. Total, 40 beds. And when I was in premature labor, the OB told me if we couldn't stop it, I'd have to be air-lifted to Salt Lake City, because that was the closest NICU.

Growing up twenty minutes outside of NYC, that was a big surprise.