Sunday, May 31, 2015

Bringing Home A Trach Baby? Tips To Stay Organized...

I've been meaning to write this for a while. Actually since about the time we did the parent room at the NICU and had to load up our baby girl in her big ride and walk to the parent room with every ounce of her equipment on the stroller and NO ONE knew a great way to set up the stroller and gear. One sweet nurse had a few pointers, but for the most part, it was a huge ordeal of frustration, trial, trial, trial, and many errors. By the time we got to the parent room and got Chloe settled into her bed, we were emotionally DONE. And yet we were the nurses and on our own. This did not go well...

And that's when I vowed to write the post about how to load a stroller with so much equipment.

But alas, that has yet to happen. However, I felt somewhat motivated today to get a few pictures of other tips and tricks and things we do to stay organized around here written up, which is the point of this post.

When we were {attempting} to get ready to bring Chloe home after five months in the NICU, my love for organization soared and I started setting up our living room to become a homespital on the weekends we were home from the city. And then I rearranged it the following week because I'd think of something that would either work better, or my naiive mind that had never done this before would realize something wouldn't work. Like her crib. We'd originally put together our other children's old crib, but we'd learned that with a trach baby, it's best to be able to get in on both sides of the crib. Our old crib had a high back, so this wasn't an option. We really wanted a mini crib, but at the time, that wasn't a quick {by this point we were coming home in a week, but only home 2 days to get things ready}, or in our budget as they are around $150, and we only had about $100 towards this. We ran an errand to Target and while waiting for something at the pharmacy we walked over to the baby section and the crib you'll see in the images below was on sale for $99. It's sturdy, slim so it doesn't take up a lot of room, and had even//level sides on front and back so it could stick out of the wall well for easy access.

It amazed us when we were finding these things and setting up her "room" at how much we couldn't find on setting up a room for a baby on a ventilator. I think I found one blog post which I read and re-read and re-read again, and one picture on Pinterest. That was it. We had to figure this out on our own, much like the stroller in the NICU, and much like learning the waters of home nursing.

Chloe is a part of our family and requires a lot of care. Therefore, we chose to set up her room in our living room so that she could be there to hang out with us instead of in a back room with a nurse all the time. This works great as on the days we're the nurses, she's right here in the middle of the action.

So here's a few tips//tricks//set-up ideas that have helped us to stay on top of functionality and organization for a baby who requires a lot of "accessories" so to speak ;).

We'll start basic. This drying rack. SERIOUSLY perfect for drying syringes and vent tubes. 
Target // Amazon

Bar for hanging notes, reports, drying trach ties. 
IKEA for less than $10. Actually, I think it was $5. It was a steal and helps so much. 

P.S. I design all of Chloe's charts. Our nurses still use their charts, but these are just the quick, simple, jot it down and remind each other charts. I have an Etsy shop where you can purchase custom designs {or any of the fun designs as well that on that shop} and if you'd like any custom made for your child (i.e. if you'd like to have feed times, medicine times, etc) just email me from that Etsy page ChloeGirl Designs on Etsy. I'd be willing to do up to 3 pages for the design rate below...

We print these charts, laminate them with our nifty $20 Amazon laminator machine, then use dry erase markers so they can be wiped clean and changed often. We've made HME trial//off ventilator trial time sheets, reminder sheets, vent alarm definition pages for nurses, gtube feeding breaks, etc. We keep them on our $2 Target clipboard on that awesome IKEA bar or on the dresser where they can be easily used. These have been a LIFESAVER when it comes to questions like, "Hey, when was the last time you vented her belly//gave Albuterol//gave that bolus of water" moments we all//you will have. 

Dresser. Aka Command Center. Aka Nurse's Desk. Aka Pile-Everything-On-It Location of the House. But it works and keeps everything organized and decluttered. 
Dresser--IKEA $250. 
Wall Hand Sanitizer--Amazon for around $20. First one comes with the pack of sanitizer, refills available on Amazon.

Additionally, we used to have a shelf with bar as a mini "closet" up on the wall beside the hand sanitizer. We kept a small tote of baby towels and wash clothes in there, and kept the humidifier up there, and hung up her pretty little dresses on the rod. But then our daughter decided clothes are unnecessary at this point in time and prefers her the outfit she wore the day she was born. In other words, she gets hot easily and barely wears more than a diaper, so I decided to take down the shelf and open up the wall more. Anything to make it look more like a home and less like a hospital room. When we did have that shelf, the board and brackets we got from
Home Depot for less than $10 total. 

Best thing ever: $3 clear totes from Target. These drawers fit 4 totes and helps to keep things from falling and mixing and mashing and not getting along with others in the drawer. 

Tricks to organizing supplies in drawers:
Use silverware separater thingy (technical term) for syringes. We call this the medical drawer.
Target less than $5
Pink compartment organizer $2 IKEA. Great for all the tiny things, like Flexitracks and saturation monitor stickies and cords. 

Wall decor organizer. Holds her sterile-ish (in other words, no little hands touching from siblings) scissors out of harms reach, thermometer, bandaids, sterile Qtips. All things we use daily. Except for the band-aids. Our three year old princess thinks those are used daily, hence why they are up so high now out of her reach. 
Target $20 

Our little set up. The ledge is PERFECT for setting supplies on. The changing table provides space for the most important piece of equipment: the Suction Machine. It's so important that it gets capital letters. We can easily grab saline bullets, diapers, sterile water, vent tubing, creams, etc. I love the changing table because it has the ledge to keep everything from falling off, and especially to protect the Suction Machine from falling off or getting bumped. 

The white three drawer thing {my brain lacks the real term} was originally there to hold the trach mask machine, with tubing and masks in the drawers. But alas, our daughter H.A.T.E.S. that machine and freaks out, wakes up, gets congested, so we improvised and kept it there for her very own personal fan. 
White Dresser Thing--Target $10
Fan--Target $10
White Storage Tubs on changing table--Target $3 each
Wire Basket Drawer on changing table--Target $16ish?
Wicker Diaper Basket on top of changing table--Target 5 years ago when we had our first child ;). 

And if you peek close enough, you'll see some oxygen tanks hidden between the wall and the changing table. In other words, well protected from five year old and 3 year old hands, but close enough for their sister if she needs them. 

We always tape her extra trachs directly above her on the crib, just like the NICU taught us. 

Our convenient ledge that we put everything on. Can't sum up how much this helps, and if you do not have a fun window ledge, would HIGHLY suggest a long home made (but extremely secure) low shelf. 

You'll also notice in our set up that we use any ounce of storage we can find. In this case, her scale which she gets weighed on daily is stored under the bed, along with those clear tubs they send home with you from the hospital {save those!! Perfect wipe-down baths!}, and we also have an under-the-bed storage tote that we keep her extra wipes and diapers in quick re-stocking. 

Finally, my technologically inclined husband hung a camera monitor above her bed so that we can check on her when we're in another room/upstairs to make sure she's ok or if nurses need help, or at night if we hear a lot of suctioning and beeps, we can jump on our phones and see if they need help or what's happening. He also installed the light above her bed (our house has high ceiling in here and we needed something brighter for trach care and changes). The monitor was only $50 on Amazon, and was cheaper than most video monitors because it is viewed on computer or phone (no little video monitor in another room), and does not have sound, but we can hear all echos of beeps already in the house. Perfect for budgets like ours that couldn't afford a $200 video monitor,
 but we can still make sure she's ok. 

Storage end table/side table thing--the many different drawers are great for having additional storage, and the dresser thingy comes in handy when we sit with her in this chair because we can put her Suction Machine on the dresser beside her sat monitor and get some cuddles in. 
Dresser Thingy--Hobby Lobby on sale for $100, or don't forget that handy dandy 40% coupon. 

And incase you didn't think you'd have enough supplies and all this post was crazy because you'd never possibly have so many many many insane pieces of medical supplies and equipment, try the shoe organizer. I saw this on that one and only blog I'd found on setting up home trach space, and it's genius. Pure genius. I laughed at first when I hung it and thought I'd never use all the pockets. Wrong. 
Shoe Organizer--Already had on hand, but less than $10 at Target. 
{Do you see a Target theme here?}

Just incase you thought that covered it, here's our one and only true downstairs storage closet. What once housed our stockpile of Costco dry goods and my big pots and pans hath been taken over by Chloe's supplies and miscellaneous equipment. {<<I spelled miscellaneous correctly first try without much coffee. Woot! Small victories these days. You'll see}. We'll call this closet the Summer Project. And incase this closet looks a bit disheveled {we really do know where everything is in it}, I might add that montly supplies get delivered in 1 day. ...I might just pass that on to our nurse and have her organize it because my mind aches just thinking of how we'll make it all fit. But soon, it will get accomplished!!

Editor's Note: My husband assured me after reading this as I wrote it that he wants to put together the stroller and all equipment for a How To Stroll post. I'll leave that completely to him ;). My fingers are tired and my mind somewhat numb after talking through just this much. 

But truthfully, this is what was missing when we came home. We needed tips, ideas, guidance, and couldn't find it online anywhere. We'd LOVE to know how other trach families set up their rooms, equipment, tips, etc. There's always room to learn more from those sharing this path with us, and to always look for the chance to get inspired by others' ideas!


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  2. This was a fantastic post with so much helpful information! We will be in the same boat come Jan 2016. I'm drinking coffee too and debating how to organize our space. I look forward to reading more posts!

    1. Glad this post helped you! Actually our little baby girl has outgrown her mini crib, so we upgraded to full size and got a bigger dresser. I'll have to update this with a new photo of how we've reorganized ;). I hope your little one will be home soon. If you ever have trach questions, feel free to email!

  3. This ishould a great post. Like you, we couldn't find much on organizing for trach and gtube supplies. We've done pretty good though. We are getting a new house soon so I'm on the hunt for new ideas again.I think I'm going to start putting our organzional happenings on pinterest so others can at least find some ideas lol Hope your little one is doing well!

  4. it is easy to handle even you are carrying other heavy goods. Lucy

  5. I can't find where to contact you. Will you please email me? We are new foster parents, and we just got called about a medically complex placement. I would love to talk to you more about your experience! Thank you! My name is Morgan, and we live in Illinois.

  6. You know your projects stand out of the herd. There is something special about them. It seems to me all of them are really brilliant!
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