Monday, December 24, 2012

The Organized Trach Mom.

Lots of new trach parents wonder how to organize and store everything at home.

This is how we do it - there are other ways, I'm sure. Our label machine has been an excellent investment, because we label everything - bins, drawers, what clothing goes where, names on equipment that might go with us to the hospital....

This is the view from the couch (futon) in Leaf's room:

As you can (maybe) see, the vent, suction, nebulizer, and other in-use things are on the shelf on one side of the crib. On the other side of the crib is a rolling set of plastic drawers, with labels on each drawer of what goes in the drawer. There's a set of Yaffa Blocks (do they still even make those?) beyond that in the corner for diapers. On top of the drawers, there's a whiteboard calendar with all of her therapy appointments and doctors visits. Under the crib, there's another plastic drawer for vent circuits and spare filters.

Our concentrator is in the hall - tubing runs into the room, around behind all that, to the ventilator, and over the banister and down into the living room. When we move up or downstairs, we switch the tubing at the concentrator.

In her closet, we have these big plastic bins - each has written on the white label what categories of stuff go in them. The funny looking white stuff on the left side is an over-the-door shoe organizer, also with supplies that we use from time to time, but not as often as the things in the rolling drawers.

Here's what we did in Acorn's closet, or at least, here's what's left: more Yaffa Blocks, on the existing closet shelves, and a shelf under the bottom shelf for keeping various supplies too. For a while, the rolling drawers were in here, just out of the right hand edge of the photo, where his new dresser is now.

Really, we found that anything that maximizes space and can be labelled is good. Going up the walls with tall shelves and such saves much needed floor space.

We have a small stash of the most used supplies down in the living room too - suction catheters, saline bullets, gauze, g-tube extension & feeding syringe, and so on. That way we don't have to run upstairs if we need something.

Tuesday, December 18, 2012

The Mixed Blessing of Nursing

Today I find myself thinking of Nurse Phyllis - one of our best and worst nurses ever, who passed away last December. 

In the months before Acorn was decannulated, we all knew she was sick - the hacking cough was unmistakeably Bad News. Clearly not a respiratory illness, even someone without a medical background could tell there was something wrong...and Phyllis had been a nurse for a long time. Acorn was decannulated in August, and we heard in September or October that she was not doing well - the lung cancer we all suspected had metastasized, and was in her brain. About the time we moved Leaf to the other hospital (which happened late at night on the 23rd of December), we heard that Phyllis was gone. She passed peacefully in her sleep, surrounded by family, which was probably about the best anyone in her position could have hoped for.

Off and on I referred to Phyllis as Nurse Crankypants - and she was. Her personality was best described as abrasive. She was overly strict about everything, from how things were cleaned to where people left things and how people fed Acorn. She was extremely upset that we let Acorn play on the floor in the therapy waiting room because who knew what kinds of germs he'd get there? She made no bones about who she liked and who she didn't - you could depend on her to provide an unsolicited assessment of every doctor and therapist we saw.

And yet, for all that....Phyllis was an excellent nurse. An LPN who had first worked in the NICU, she knew complicated kids like no one's business. She knew death too - one of her own children had died in a car accident in his early teens - and she was adamant that it was not happening to anyone on her watch. Her assessment skills were top notch. And I know that I said more than once that if something was to go pear shaped, she was the nurse I hoped was on duty, because even more than Acorn's primary (who, I might add, is also Leaf's primary), Phyllis was the one person I trusted beyond anyone else to handle an emergency, without any questions, and without any missteps.

Beyond that, Acorn loved her. It was not an easy relationship in the beginning, but she was tough in a way that he really responded to.  When she first started here, many of our other nurses were sure that we'd hate her, that she'd be too hard on Acorn, that she wouldn't get him...but more than many others, she saw what he was capable of, not just what he let on.

What made me think of her today was Acorn's appointment with his PMR doctor (which was supposed to be yesterday, but the doctor cancelled, and then should have been today, but Acorn is sick, so now it's the day after Christmas). Our PMR appointments are usually on Mondays, and Monday was one of Phyllis' regular days, so she ended up going to almost all of them with us. She gushed in the car on the way home after that first appointment about how this particular doctor handled Acorn...and she didn't gush about anyone or anything. I was pretty pleased with this doctor as well, but it was nice to have her backing me up on that front - it meant it wasn't just my feeling of, "finally, someone who sees the problems I see and wants to do something about them," but that this doctor really is a special kind of guy.

I don't know how Phyllis and Leaf would have gotten along - Leaf is sensitive in ways Acorn never was, and probably never will be. Still, I think they would have figured something out.

I never thought I'd say this when we first met her, but Phyllis, you're greatly missed.

Wednesday, December 12, 2012

Happy Trachiversary

Today (Wednesday) is Leaf's trachiversary - she has had a trach for a whole year.  It seems longer, and shorter - time is funny that way.

Ironically, tomorrow she goes for her first ever bronchoscopy. They will also be putting tubes in her ears and clipping her upper lip tie.

Only time will tell, but she babbles like crazy, and I think will have fewer speech issues than Acorn. We're going to start weaning her off the vent while sleeping over the next few weeks too. She can crawl up the stairs by herself, but can't get back down - she's ahead of Acorn at this age on a lot of gross motor things, which always startles me.

This is definitely not how I pictured things going....but it's not a bad deal overall. We mostly love our nurses, and we know she's well cared for during the day while we're working. I'm home with the kids some, which I probably wouldn't be if things had gone as smoothly as we'd hoped. It all works out in the end, you know?

Tuesday, December 4, 2012

Yule is coming...

...and again,we are woefully under prepared and quickly running short on time.

I think part of the problem is, as someone I know once pointed out, once you have kids, part of the holidays is making your own traditions rather than necessarily following the traditions of your respective families - and we've spent 2 of the last 4 holiday seasons with a child in the hospital. So really....that's our most traditional thing. Not a good foundation for building a tradition, really - at least, not a tradition anyone really wants to follow.

Another part of the problem is that many traditions this time of year (starting at Halloween for secular and Christian folks, and really all the way back to Lughnassadh - a harvest festival - for Pagan folk, and running all the way through New Years) center around food. When you've got 2 kids with feeding difficulties, normal meals can be pretty darn complicated, and big family feasts even more so.

And, too, having nurses here again is putting a damper on many things. I've got Christian friends with trached kiddos who talk about telling nurses that they're Christian and they play Christian TV shows and sing songs and such, and if that's a problem don't come back...we likely would have very few nurses if we tried that.

Plans for a little altar space and nature table were largely scrapped last winter, though are being revived in another form. Posters and other things never got made while Leaf was in the hospital.

Even putting up a tree is fraught with tension, between 2 cats, a 4 year old who will climb anything, and a 1 1/2 year old who puts everything in her mouth....except solid foods. The fact that we didn't put up a tree Acorn's first holiday at home caused friction with nurses - some were convinced we were Jewish, others were convinced we hated Christians (WTF?), and some just figured it was part of our long list of quirks.