Rompers are on the list of things men don't find sexy, but are fashionable. So there's that.

Ugh, Kat. What sort of schedule could you keep, and be sane?

ita, it's not the schedule you know. I mean that poses its own problems, but no more than any other kid.

Changing the ties that keep her trach in place is in many ways harder than changing her trach itself. And we have to do that every. single. day.

I don't know. It takes a lot of high stress, unfun, really disturbing work to keep Grace alive and I just don't feel like I can do it.

{{Kat}}

My romper was basically a button up t-shirt combo that could have been pjs. Comfy as all get out but NOT fashion related in any way. As were the baseball jersey and cut-offs I lived in that year.

Oh, Kat, that`s so hard. My friends whose son is on a g-tube (and central line port, so super scary and painful to replace when it gets pulled accidentally) and has an extensive care schedule had some similar troubles with their transition. But they got settled in and are doing well with his care. You will too, but I know it`s so hard.
 
Well tonight I nearly made it. I punked out on the 4th set. I made it through both rehearsals and the two sets of the memorial. It was really nice; lots of people showed up. And I made it through the first set of church, but I couldn`t get my cough settled down during the sermon so I didn`t go on for the last set. I needed to crash bad. It was just too much. So just chilling tomorrow morning because we`re having a couple of people over for the game. So tired.

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.