Oh Kat, that sounds so horrible and stressful.

This guy has never heard of RuPaul!

I know someone says this everytime, but my brain keeps wanting to mix up RuPaul and Rand Paul (and Ron Paul, truth be told).

I wish it was RuPaul on the verge of being elected and not Rand Paul.

Kat, I know you have some limited nursing help, right? Is it possible to have the nurse be the one who changes the trach weekly? I honestly don't know how you do this. I can't even trim my dogs' claws.

Well, no. Not quite possible changing the trach or her trach ties is a two person job. Three on some days.

The first day she was home we tried to have the nurse involved. The glove she was wearing got stuck in the trach and when she tried to move it, Grace decannulated, which is terrifying and no good. It's like a trach change but without the new trach, lubrication or any advanced warning.

Holy cow. If an actual nurse has problems with it, I don't know how you deal.

ETA: Is a second opinion from another pulmonologist possible? Also, sorry; I am sure EVERY thing I could suggest or say has already been thought of and discussed by you and Katie. I just hate feeling so helpless to help you.

My mom, who is here and is an RN, is actually pretty good at it. Or she's good at holding Grace and I can get the ties changed. Usually.

It's only partially the pulmonologist's call. We have an appointment with the ENT on Tuesday. And it's weird. The ENT brought it up in May, when Grace was coughing up blood and needed to be scoped. Prior to that, we just thought the trach would be part of our long term life. Had he never brought it up as a possibility, I might never have considered that it was. Now that it was out there as option, and it doesn't look probable, I am bereft. When two months ago, it wasn't an option at all and so it didn't factor.

I am too tired and sleep-deprived and stressed about money to be able to really get a good worry on.

Ugh, Kat. I am so sorry. It just all sounds so incredibly stressful and I wish I could make it all go away for you.

Kat, I wish there was something--anything--that I could do for you and your family, besides sending all the ~ma I've got.

It all sucks, and you shouldn't have to go through it. I'm sorry that Grace being home is not the unmitigated joy it should be.

GOOD GOD you guys talk a lot. This isn't a complain or anything, but I guess I wasn't expecting like 193 new messages when I woke up! This is what happens when you sleep while everyone else is awake, I suppose.

Man, tornado sirens! Those suck. I've never seen a tornado, but when I was at school in northern Minnesota they'd go off from time to time. No fun at all.

I am suddenly reminded of non-life-threatening weather phenomena - anyone ever seen heat lightning? I think that's what it's called. I saw it once in Minnesota, it's amazing!

Oh, and 'cause someone asked - I'm learning Mandarin!

What Maria said, Kat. I wish there were something more we could do for you.