Gore-ganization 101

 This post is something that Michael and I have been wanting to blog about since we got everything organized. Before Emma came home from the hospital on April 30th I had looked up other blogs about "trach babies at home" to see how those parents organized all of the medical supplies. So here I will show and explain how we have things set up. Most of it was organized by Michael because he kind of has OCD when it comes to keeping things neat and clean, and he likes everything in certain places. Would you believe that this is the first time we had used our Canon camera to take pictures of Emma? It surprises me! But using our phones is always faster and easier for uploading to Facebook and Instagram.

Michael found this nifty four-drawer tool chest from Home Depot, which was the perfect size to hold all of the medical supplies that we knew she would have (we got the boxes a few days before she came home). It also fit so perfectly in this space between the crib and the wall. One thing that is hard to see in this picture is the metal PVC sprinkler pipe that he screwed into the wall which is what her turquoise feeding pump and bags are hooked on to. It wasn't until the second month that Emma was home (June) that Michael added the dry erase calendar and paper towel holder. On the calendar we keep track of which days we have to change out her trach to a clean one (usually every Sunday), and when we need to change her ventilator circuit tubing and clean her nebulizer pieces in vinegar (every 10 days).

  On the top of the chest (when Emma is in her room at night) we keep her pulse ox monitor. When we move her to the living room during the day, all this stuff comes with her. The top red number is her blood oxygen level - I call this her happiness level - and the green number is her heart rate. The gray thing is her suction machine to suction out her mouth if she gags while pooping and too much formula or saliva comes up that would be hard for her to swallow. We also use it to suction out her trach after she coughs a bunch and has phlegm. The clear crate has pink sodium chloride bullets that we flush the suction tubing with as well as many little bottles of purified water. Behind that, which you almost can't see, is her nebulizer, like a breathing machine where the pieces (not pictured) connect to a spot in the trach and the inhalation solution gets mixed with air and helps open up her lungs. She gets this twice a day, usually around 8am and 8pm. The bottles behind the pulse ox-monitor are just hand sanitizer and a water bottle to make it easier to clean the calendar each month.

See how Michael has every drawer labeled? So efficient!

First drawer: lots of stuff used for trach care like trach ties (the "collar"), long Q-tips, saline wipes, alcohol wipes to clean the equipment, more sodium chloride bullets, scissors, her baby toothbrush and Elmo toothpaste, stethoscope, thermometer, etc.

Second drawer: mostly feeding bags and Farrell (gas) bags. These get changed almost every day.

 Third drawer: extra circuit tubing, nebulizer pieces, suction catheters.

 Fourth drawer: Mepilex which is a thin orange foam piece that goes under the trach so it doesn't rub against her skin (you can see that in the top photos of Emma), and a ton of different sized gauze that we use to clean around her G-tube. The five bottles have distilled water that we use to refill her humidifier that is attached to her ventilator stand (not pictured.. sounds like we need more pictures here!)

 These two bags taped to the crib for easy access are for her trach. The one on the left does not have a trach in it because that is the bag for the trach she currently has in. Emma uses the Bivona Flextend 4.0 size. Michael always writes in permanent marker what date the trach was last changed.

 The third bag you can see below is just a medium size syringe that we use to deflate and inflate the G-tube balloon inside her stomach and check how much water is in it. Sometimes it has 5ml in it, so we check every few days that it is full with 6ml because that lessens the likeliness of her G-tube popping out if she pushes her stomach out while crying heavily (not common) or pooping (very common).

 Before Emma was born Michael revised the closet because he wanted her to have a changing table that was out of the way. That was before we knew she would have a trach and be attached to a ventilator at all times, so changing her on a thick pad on the floor or in her crib is much easier. Also not pictured is a Graco Pack-N-Play that we got very recently in preparation for any hurricanes. Michael said he would like us to move Emma and everything she needs into our bedroom on the other side of the house incase the tree in our backyard falls on the house/ over her bedroom. It will be fun having her in our bedroom with us for a few days, assuming another hurricane hits Florida this year. We also got a Generac generator before she came home in order to run all of her equipment during a power outage. During the last hurricane (Irma, September 2017) our power was out for almost 24 hours after the hurricane passed. I am actually surprised our power has not gone out from all the crazy lightning storms we have had this summer. So far the power has only flashed for a second without any issues.

 Items pictured here include a spot I "forced" him to keep to hang clothes. Because baby clothes are the cutest and I already forget about clothes she has if they are not hanging up for me to see. Fun fact: at almost 15 months old, Emma is currently fitting best into 3-6 month outfits. She weighs almost 14 pounds now. The dog pee pads are actually for Emma because for a while she had a terrible diaper rash so he put those under her when she was "nuding it up" to air out her butt and it is a lot easier to throw those away every day than wash dirty blankets every day. That box was 50 pads for $9.72 at Walmart. More recently we have used the pads in Emma's crib under her blanket incase her G-tube or feeding port pops out and leaks everywhere. The brown boxes are just extra medical supplies that don't currently fit into the Home Depot chest. So many more medical supplies, medicines, and diapers at the top of closet too. Since the diaper rash issue a few months ago, we switched to only using Huggies, water wipes, and Z-guard cream. Emma has the perfect baby bottom now and no longer cries during every diaper change. Hooray!!

 This is our "trach table" that Michael made out of a laptop table and changing pad. It is clipped around the bottom and Michael also sewed on velcro strips so it doesn't come apart. We sit indian style on the floor to do her trach care every night. The picture below that shows Michael's cleaning supplies. He does the cleaning of Emma's neck and stoma while I support her body and hold the trach in when the ties are off.

   Michael has made a few things to make life a little easier since Emma has been home, including this ramp that we have in the garage with anti-slip strips. Before he made this, one of us would always have to pick up the front of the stroller to get Emma in and out of the house.

   We have the Baby Jogger City Mini GT stroller and when Emma got to the point in March where she was off some of her medicines and able to go on stroller rides around the NICU, Michael made modifications so we would not need a "medical stroller". We need some normalcy in life and got the stroller from his parents before she was even born. The backpack has everything we need for all situations: extra trachs and trach supplies (same size/ 4.0 and one smaller/ 3.5), extra clothes, changing mat, diapers, various butt creams, syringes, medical tape, gloves, saline bullets, HMEs (humidifier), a copy of her 10-month discharge papers if we are ever at a hospital that is not in Orlando and they can't get her records, etc. I also have extra copies in the medical binder that bring to all of her doctor appointments. We still have at least three scheduled every month. In the undercarriage area of the stroller we have her suction machine, Ambu bag (for CPR via trach- luckily we have not had to use that!) and the battery pack to plug in the ventilator batteries when we are gone for more than 5 hours. See previous post "Local Daycations" for more about that.

   I have talked about the purple "in-VENT-tion" before, but Michael built this himself so we would be able to hook her ventilator into the Never Give Up board. He bought the dovetail bracket so the ventilator secures on and is the same bracket found on the ventilator stand. The whole purple piece clips on to the stroller in four places. We take it off in order to fold up the stroller in the car. The oxygen tank fits perfectly between the board and the back of the car seat! Isn't he just the most handsome genius!?

   Right now we are at Arnold Palmer Hospital (I'm using their Wifi to update!!) because Emma was getting a few scheduled procedures done today. Everything went very well, but we have to stay for 24-48 hours to make sure she recovers well. She needed to get her G-tube site fixed. It has been prolapsed since a month or two after she got it done in September of last year. We believe the issue was because she was on such high ventilator pressures (a PEEP of 14 in Orlando, and 18 in Michigan around Christmas) which expanded her stomach and caused a prolapse as well as the skin stretching out over time. The surgical doctor sewed up the site two different times, but it would always stretch out again. This also caused the G-tube to pop out many times since she had been home, but Michael and I were always able to get it back in without much of an issue. Of course that is something we shouldn't have to deal with, so today he closed up the hole all together. It will have a drain for a few days because closing it all together would cause an infection. Emma also got another bronchoscopy done to check to see if those pesky fistulas are all healed, as well as a hearing test. The audiologist said her hearing is perfect and she did not require ear tubes. Thank goodness!! We have been saying a lot of extra prayers lately.