If you have already read the previous post, you know that two months ago, in mid May, Michael took a work trip to North London for a week! This was my first time ever taking care of Emma by myself overnight, and my mom graciously came down to help. However, amidst all the fun and laughter we had, we also encountered a handful of problems. I didn't tell Michael about any of them (until he got home) since I had everything under control and was able to get all of the issues solved on my own. There was no need to worry him.
The first issue we had wasn't so much an issue since it happened the night before he left. This is why we always do a trach change before one of us (ie: me) goes on vacation. The trach was basically broken. One of the sides that allows the fabric to loop inside the holes on both outer sides (does that make sense?) to hold the trach into her airway was almost somehow ripped off! Useless! So we had to throw that one away and put in a new one, which was a super bummer since our medical supply company has been telling us that trachs have been on back order since September!! In Orlando, using a company (Children First) that doesn't service the area we now live in, we used to get a trach every other month -no problem- even during Covid! Emma finally just got a new trach at the end of June, and it wasn't even the right one, but it will do.
The first issue we encountered, when it was just me and my mom taking care of Emma.. the connector clip on Emma's battery pack (which is needed for her ventilator to hold a six hour charge when we go places) broke off. Here is how it looked with the piece broken off VS how it was supposed to look with the tiny, yet mighty pertinent, "hook" that keeps it attached to the ventilator side.
I called the medical supply company and asked how soon we could get a new battery pack, letting them know Emma had two doctor appointments that were not nearby, so we definitely needed use of the batteries -and soon. They told me someone could come by on Tuesday afternoon, and a guy did come to switch it out. I was very pleased! Crisis averted.. or so I thought. *dun dun DUN!*
The picture below is not a snafu, but more about showing an inconvenience that my mom learned while she spent the week with us. Suctioning Emma in the car is not an easy task. It requires elbow room that is not available, and it is even more difficult while moving! We were parked in this photo. And notice how my mom is up on her knees to get a clear view? I have to keep my seat belt on when I do it. It is definitely something that gets me crabby on long road trips, but I always have to sit in the back with Emma because I fall asleep easily when driving long distances! I usually have to try to look out the window when I'm suctioning her since I am prone to motion sickness. But I also have to make sure I get the catheter down to the right spot without hitting her carina and making her gag.
Second snafu: This stinker has a bad habit of slamming her tubing down into the floor. I used to think that she liked the puffing sound it made when she "messed it up", but now we have learned that it means she wants to sprint (be disconnected from her ventilator). However, on Tuesday night, she slammed it so hard that it broke! Michael had just changed all of the circuit tubing two nights before (it usually gets changed every two weeks) and I had never done it myself, since he dubbed that one of "his chores". Time to step up to the plate! I took pictures of everything, knowing it wouldn't be that difficult. I was mostly concerned with making sure I put the three tiny tubes on the side of the ventilator in the right order. (Michael told me yesterday that they are different sizes so literally nobody can mess that up. Nice!)
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| This is what it's supposed to look like/ this is a new one. |
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| What a punk. |
Easy peasy! This is the picture I sent Michael, letting him know that our night went perfectly.
Snafu number three was the biggest: on Wednesday we took Emma to her KAFO/ leg brace appointment in St. Petersburg, using the new battery packs that had just been traded in. La de da, everything was fine until two hours after we left the house. Mind you, these battery packs are supposed to last six hours.
The ventilator started beeping and flashing "power low". Once the battery packs run out, you only have about 10 minutes of internal battery in the ventilator before it automatically shuts off. Sometimes all the lights on the front of the ventilator would turn off, until I clicked the Silence/Reset button, to conserve energy. For some reason the battery was not accepting the second battery (it's two long batteries in one pack). The second one had a completely full charge, as you can see in the photo by all the green lights. I even switched them to other sides in case it was only pulling a charge from the right side, but it didn't make a difference.
I thought I had more pictures, so I could make the post as dramatic as it felt- as it was! But I guess I should have asked my mom to take pictures of me on the phone with the medical supply company again, making angry/stressed faces. Because that's what happened. Maybe I should add more exclamation marks!!! It was chaos I tell ya!!! Even the respiratory therapist guy I spoke to at the company replied, "That's friggen weird", to my explanation. I definitely needed another new battery pack. My mom was keeping Emma occupied for me though. To Emma, everything was fine and dandy. Thank goodness for her loving to sprint and her strong right lung letting her be able to.
When I took a breath, and thought logically, I realized that if Emma could keep sprinting for the rest of the appointment, we could get home fine by plugging the car charger into the ventilator. And then sprint her again for a few minutes while getting her into our apartment upstairs where we could plug the ventilator back into the wall outlet. That plan worked. I wanted to go to the Sunken Gardens after the appointment because it was only a few minutes away, but obviously that wasn't happening that day. All of this panic made me think about our day at the Sanford Zoo and the Orlando Eye (two different posts linked for your viewing pleasure) when her battery was about to run out then too, but guess what- that also all worked out just fine!
When we were at home later that Wednesday, with me still trying to figure out how we could get to the Sunken Gardens that week, I came up with the following plan for the next day instead: have the ventilator plugged into the car charger while driving so we can save the battery for the gardens, knowing we will only have two hours available on it. Then make sure we get back with enough time to charge the battery again since she would need it for physical therapy at 4:30. Basically any time we drove somewhere the ventilator was plugged in. I don't have a picture of the ventilator being plugged in, but it looks just like the clip in the "hook" picture and the car charger part sticks into the cigarette lighter in the front passenger side. There is also a cigarette lighter in the back, which we used for trips if we need to give Emma a nebulizer treatment while driving, but I didn't have to do that with my mom.
While we were at the gardens, I got a call from Vicky, Emma's usual respiratory therapist from the company (not the one I talked to on the phone). She said she was working on the issue for me, running the battery on a LTV1150 ventilator -the same as Emma has- to make sure that the batteries take. And that she would ship it out to us over the weekend. Thank you, thank you!
Emma's snafu- sometimes she is not in the mood for physical therapy:
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| "Grammy, help." |
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