Vent & Trach Dependent Tubie in the Mountains

   I had been very eager to see how our vacation would go, partly for the fun, but also very interested from the medical stand point. Having a toddler-aged baby who has a full time trach, is ventilator dependent, and with a continuous feeding tube in her stomach (kids with G-tubes are often referred to as a "Tubie", as you'll see in this blog title), how easy or difficult would it be with her on a vacation compared to every day life? Well, I am here now to answer my own questions!
   Emma did so well on the trip and we are so proud of her. I can say in all honesty that we had no major issues at all! The only minor issue we had was that on Wednesday morning, she got water down her trach twice (at 3am and 8am) due to condensation in her vent circuit tubing, but I would not call that a vacation issue since that has unfortunately happened at home several times. I hate when it happens, but it is sometimes hard to prevent in the middle of the night while we're sleeping and I have thought that if we had a night nurse, that would be their only purpose. It was the only time on the whole trip that she required oxygen, and only for a few minutes. Our pulmonologist sent an order for the medical supply to let us borrow a portable air concentrator for the trip (the one we use at home is huge and really heavy), but we never needed to use it. It was still great to have just in case! Michael said the reason he didn't use the portable air concentrator when Emma needed oxygen on Wednesday morning is because "it was out of habit" and that the concentrator was for more of a long term thing.
   My friend, Alana, asked why Emma sometimes gets water down her trach, so I will answer that here too. When it is cold in the house (or cabin) more condensation is created since the humidifier water stays at 93 degrees to keep her trachea and throat moist since the puffs (breaths) from the vent can dry it out. We had the cabin set at 72 degrees at night and it stayed that temperature, so I think it was more a gravity issue due to the small size of the Pack N Play that Emma slept in. We used an alligator clamp to hold the circuit down in the "bed", but with Emma moving around in the night it could have been kicked, causing the tubing to be more at an angle, allowing the condensation water to quickly trickle down into her trachea. She will quickly start coughing and crying, and luckily we always hear it so we jump out of bed and suction her, hoping to suck up as much as possible before it goes into her lungs.
   I told Michael that I didn't sleep as well with Emma being in our room at the cabin (compared to hearing her and the vent through the baby monitor at our house) because I kept waking up, listening for the water moving through the circuit. We've learned to hear it. Normally she doesn't get water down her trach at home unless we don't know it's going to be cold and the temperature in the house gets down to 68 or 67! So again, for the vacation, I think it was a space issue. Her crib is about 4x bigger than the Pack N Play so there is more space for the tubing to lay next to her in the crib at home.

   Before I get into even more medical talk, I wanted to share a few pictures from when we went to Dahlonega with Michael's mom on Sunday (March 24th/ Day 2 of our trip). I had wanted to go there for lunch because when we went there two years ago, it had been raining, so we did not get to see much of the town. It is a pretty tiny town and doesn't seem to be much to see in the first place, but I wanted to go back to the Picnic Cafe where they have a yummy Georgia peach chicken salad sandwich and cheesecakes. I got both and then we got a block of fudge from The Fudge Shoppe. We walked through a few really cute shops and the General Store, but didn't buy anything.

   I knew Emma's EleCare Jr vanilla formula was going to run out while we were at lunch, and we try to change the bag in the middle of the day (sometimes we over estimate how much formula we make and don't end up changing the bag until 10pm or later)! So I prepared and filled a new bag with 5 hours worth of formula, liquid Pectin, and Beneprotein. I also brought a small bit of water to put in the old bag when it was almost empty (as you can see it was in the car photo) that way we can get all of the formula from the tubing, rather than throwing the old bag away and wasting that bit (about 40 minutes worth/ 20ml). I did that part while we were riding in the car. The water finished pushing the formula through after we ordered our sandwiches, and I was able to put the new bag on and prime it through the fresh tube. Since we were out we didn't worry about cleaning the G-tube (the tube that goes between the Mic-Key button in her stomach and the end of the feeding tube), but that wasn't a big deal since Michael realized two months ago that four G-tubes are given to us by the medical supply company each month and we change the G-tube out once a week. We do need to ask her Gastroenterologist for an extra Mic-Key button though.

   There were two other issues that were pretty quick fixes; not really anything to be panicked about or anything that would mess up the vacation from a medical stand point:
   On the first day, when we took Emma to Hog Pen Gap with Sasha to hike a tiny portion of the Appalachian Trail, the oxygen tank that Michael brought to hike with somehow completely ran out (from being brand new and full) during the 10 minute car ride from the cabin! He thinks the lever that empties the tank was pressing against something in the trunk even though the dial was at 0 liters. You can see it is at .12 in the picture. Luckily, Michael brought two other tanks. Emma barely needed any oxygen during the trip, and none at all while we were driving around or hiking. Yay, Emmylou!
   The other fixable issue was on Sunday night (Day 2), while Michael was putting the ventilator backpack into the car on our way back to the cabin, one of the straps ripped off! He had to explain this part to me: It was a nylon strap that was attached to the aluminum frame with a rivet- one of the straps with a buckle that holds the battery packs on. I was worried that would mean we wouldn't be able to hike the rest of the trip, but the next morning he was on the floor fixing it. He said he should have put a washer on to hold the strap in place while putting the backpack together, but since he had not, the hole in the strap stretched out by being pulled over time. He was able to temporarily fix it on Monday morning using a screw from the oxygen tank holder. The nylon strap slid over the screw in a different spot (on the oxygen tank holder) and the nut for the screw sandwiched the strap on. He used his mom's tweezers to tighten the screw. Hooray!! He is such a smart man.

    Next are some of the cares we do for Emma (treatments, bath, trach care), showing us doing them in the cabin in a smaller space, compared to doing them at home. When we got to the cabin Michael filled up her humidifier since she had been wearing her HME all day. The HME (heat moisture exchanger) is worn when Emma is not home to use the humidifier that has to be plugged into the wall in order to work. It is just a small piece that connects into her vent circuit near her trach. At home around Orlando it is mostly used when we go on family dates or, more commonly, to her several doctor appointments each month.

    Her treatments (to open her lungs) were done around 9:30-10am each morning. Emma likes to help give her puffs. Since she was doing so well she did not require her treatments earlier, except on Wednesday morning when she got water down her trach twice, then we gave her treatments around 8:15. Her treatments were also given each night, as they always are, around the same time, 12 hours later in the PM.
   Michael usually gives Emma a bath every other night, so she got three while we were at the cabin. We brought the newer tub with the water temperature gauge. Emma has a big bottle of Suave Kids 3-in-1 shampoo/ conditioner/ body wash, but since we were conserving space while packing, Michael pumped enough for the trip into a small bottle and labeled it.

Dried nebulizer treatment pieces, syringes, and formula measurements.

   When we were "home" (at the cabin) during the day, when we weren't out hiking or exploring, Emma stayed laying on her mat in the living room. She stayed there until it was time for bed after her bath, treatments, and trach care, then we would move her and everything into our bedroom. Below is us doing trach care on Monday night when trach changes are done- when the trach that has been in her for a week gets taken out and replaced with a clean one. In the collage you can see (on the right) a cup with 2/3 water and 1/3 vinegar, with her old trach that was being cleaned Monday night. Obviously with Emma, there is a whole lot to pack/ fit into the car and small things that are only used once a week (like the vinegar) that we have to think about and remember to bring.
   **On the left side of the collage below, is Emma's Augmentin medicine given via G-tube. We get two white bottles of the Augmentin powder, each lasting 14 days, and it is mixed with water from the orange bottle. We knew she would need a new bottle of Augmentin for the trip (every other Monday).
   I started making her medical packing list two months before we left, that way it would give us time to add things that I forgot or extra items we thought would be useful. The only thing we forgot was her mouthwash. She has only been using that for a few weeks, so it wasn't on the list, which wasn't a big deal. Michael didn't even care to buy more when we were at Walmart the very first night. We dip a small square sponge on a stick into the mouthwash, press it against the side to squeeze it out so there isn't too much, then roll it around inside her cheeks and on her tongue. She sometimes gets halitosis due to not eating anything by mouth, so Michael wanted to start using the mouthwash, which we immediately suction out of her minty fresh mouth when we're done.
   One item that was not on the list, which Michael was very smart to buy at Walmart the first night, was a surge protector. Emma has a lot that needs to be plugged in at night at the same time (sat probe monitor, suction machine, ventilator, battery packs, feeding pump charger, treatment machine in the morning), so between not wanting to blow a fuse (plus, we didn't know where the fuse box was), and needing extra outlets, the fuse protector was an awesome item to have! We do use a fuse protector at home, but it's now another item add to the packing list for our next week-long vacation! There is so much to bring that it wouldn't be worth it to only be gone for one or two nights.

   ^^ That is the Eclipse 5 Autosat SeQual portable air concentrator (it converts room air into oxygen) that we borrowed for the vacation, but never had to use it ~ yay!! Michael brought 3 oxygen tanks too, which are usually only used when we go out since they don't have to be plugged in.
   Every 10 days her vent tubing circuit and filter has to be changed out to a clean one (we throw the old one out- it doesn't get washed), so we did that on Sunday afternoon before heading to Dahlonega for lunch. We have never had an issue with the circuits, but Michael was smart to bring two extras incase there was a hole or an issue with one of the new circuits. We brought extras of a lot of stuff including Ipatropium Bromide (her treatment solution) and a lot of sodium chloride bullets, used to clear her suction catheter tubing after we suction her trach. She did need her trach suctioned more than usual, but the reason for that was a mix of two things:
   1- Emma was being moved around a lot more on this trip than she is at home, between driving a lot, or being carried on trails, swinging at the park, etc. That moves around a lot of phlegm from her body which gets caught in her trach making it harder for her to breathe. She doesn't always get crabby when she gets "crunchy/chunky"- it makes a rattling wheezing sound in her chest, but when we hear that we usually suction it out right away. She has even been laughing or doing a dance (excitedly pumping her arms and kicking her legs) when we suction her. I meant to mention that a few posts ago in the "Her New Thing" section.  She's been doing that for a couple months and I love it!
   2- when Emma is not inside and hooked up to her humidifier, she has to wear the HME (heat moisture exchanger) connected to the side of her trach, as I talked about earlier in this post.  Although the HME helps keep her trachea moist so she doesn't get a sore throat, it doesn't work as well as the humidifier with distilled water. She had to wear the HME most of the day on Friday and the following Thursday when we were in the car for 10-11 hours, driving from Orlando to Blairsville and back. When she is reattached to the water humidifier, it loosens up the phlegm and we had to suction her every 10-20 minutes for the first hour.

   This picture in the trunk of the car shows Emma about to get her diaper changed when we got to the park, and then we always suctioned her before moving on (using the regular 7-pound gray DeVilbiss machine right next to her), that way we wouldn't have to suction her in the middle of doing fun stuff. When we were hiking on Hogs Pen Gap during our trip, I had a portable suction hand-pump (in the red bag) hooked onto the medical backpack that I was carrying. Emma began coughing at one point so I quickly put the pieces together, but then she seemed fine and we didn't end up using it. I took a picture of the inside of the bag just now so you can see what it looks like:

   The rest of these pictures are to show how much we had to bring. In the photo by the door it doesn't actually look like that much, but Michael said he really had to play Tetris to get everything to fit. Plus this was taken while Emma was getting her treatments done the morning we left, so there were more medical machines not shown, and with things being stacked, it looks like less. We used his Mazda CX-9 on the trip because it is longer with more trunk room (when he folded down the third row of seats) compared to my SUV that we always take when we go to doctor appointments and only need her stroller, Ambu bag, and medical backpack.

   I took the pictures of the inside of all the boxes on our last day in Georgia, so there are less supplies than when we started. I'll try to point out everything that is in each box. Michael got this DeWalt TSTAK tower tool box from Home Depot. It was great for holding everything, but I thought the silver clips were too tight and hard to get open. I did like the little click drawers though.

    ^^ Sterile saline wipes to clean around her Mic-Key button, Q-tips, pink Sodium Chloride bullets after suctioning her trach, medical tape, tan Coban wrap to cover the probe on her foot (to help keep the pulse-ox connection stronger), stethoscope, trach after it was cleaned.

 ^^ Baby toothbrush and toothpaste, several HMEs (one per day), new nebulizer kits for her lung treatments (she gets a new one every other week and the old one is thrown away), QVAR puffs also for lung treatments, extra suction catheters which gets switched out every 10 days with the vent circuit tubing, the circuit tubing would be at the bottom of this box under all the other stuff.

 ^^ KY jelly to help her new trach slide in easily, sat probe monitors that stick to her foot and an extra cord that connects to the monitor, poseys that also wrap around her foot to keep the probe on, baby shampoo (but that wasn't used because we prefer how the Suave Kids brand smells), scissors, sterile water used during trach care, lens wipes for her glasses, 2x2 gauze used to clean around her Mic-Key button, Hydrocortizone cream which is used if she gets a diaper rash (it was not needed to be used on our vacation), stoma powder.

^^ Vinegar to clean her trach, 3ml syringes for her meds and 10ml syringes to add Pectin to her formula, blue swabs on a stick to clean inside her mouth after brushing her teeth (we just used them dry since we didn't have the mouthwash), Ipatropium Bromide clear medicine bullets for her lung treatments, purple Coban, baby Tylenol - also not needing to be used, hooray!!

^^ This picture I did take before we left that had her formula (two unopened cans). We used 1 1/2 cans during the trip. Each can lasts about four days and I believe I mixed up her 12 hour batch of formula for the ride up using a can we already had opened. Also included in this portion of the tool box: feedings bags. extra G-tubes, G-tube wire cleaners, the bag of power is her Beneprotein, the jar of Pectin was in there too but not shown.

^^ The box in the corner is the clean humidifier piece that gets switched out with the vent circuit, more sodium chloride bullets (we were probably using at least 12-15 a day? I didn't keep track), extra blankets for her Pack N Play, dog pads which we put under her each night incase her G-tube leaks, and all of the bags Michael put together. Here is a more detailed photo of those that he took for me:

^^ Gloves (different sizes for me and Michael), trach ties, different sized gauzes to wash and dry her neck, shampoo for the washing, Q-tips, Mepilex (the thin pink sponge stuff around her trach so the plastic doesn't rub against her neck).
   I think that's all of the stuff I wanted to say from the medical standpoint of our vacation.. There will be a quiz on the next page. Good luck! :p