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.
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.
I came across your blog and have read many of your posts. I have a former 26 weeker born early 2010 with a trach and reading some of your posts I'm shocked at the similarities between my son and yours in particular the anxiety/fears. I'm curious how you deal with it and how he's doing now going to doctors/hospitals for example. My boy is doing great all things considered but cannot voice due to the trach (subglottic stenosis) so he signs instead of talking, has lower than normal muscle tone and still cannot hop/jump/can barely climb stairs but gets around fine (though his run is a little goofy looking), and has many anxieties I can tell even though he's not yet 3. His cognition is right on target and nothing gets past this kid :) I do worry about his anxiety/sensory issues though. I also find that we don't fit into typical support groups as they are very autism focused. Just curious about your experience with the anxiety as you're ahead of us a bit.
ReplyDeleteHi Amy! Thanks for reading.
ReplyDeleteAcorn only learned to jump this year - around age 4 he finally got the both feet off the floor at the same time part of it.
Anxiety wise...we're seeing a psychologist, which has helped some. We are using key words to cue him, like "just touching" and "just looking" so he knows for sure that some things aren't going to hurt. We've also taken him along to other appointments (mine, Leaf's, etc) to give him doctor experiences that aren't about him, to try to make it less likely that there will be something "bad" every time he goes. We take an older smart phone with movies and games to use as a distraction. It's a work in progress....but it's also become something of a gauge of doctors themselves. Good doctors aren't phased by it, and work around his protesting,rather than making it worse.
Sensory wise, our neurologist has offered to write a script for sensory therapy, but we're going to have a larger evaluation done at a clinic for autism& other developmental disabilities in a few weeks. Out of that we're hoping for some more solid diagnoses and guidance on what direction to take things. Especially since that we can use to push the school for accommodations that should help.
I've found that some of the trach oriented groups on facebook are pretty wide ranging, as are a few others that are more geared towards medically complex families. Sensory issues are not uncommon among former preemies, so a lot of those families deal with them, even though their kids aren't autistic, and the groups have a more broad ranging focus to begin with.