Crash- Station 19/Marina

Appointments

A week later they were both adjusting to being home. It was hard, especially nights. Maya had to change positions every few hours overnight to prevent pressure sores but she couldn't do that herself so they were both waking up a few times every night. But they were both happy to be home and they were figuring it out.

"Good morning" Maya said when she woke up, Carina still asleep.
"Hmm, you wake up so early" Carina mumbled sleepily
"I know" Maya said. She was laying on her side facing Carina so she put her arm around her causing Carina to move closer. "I'm sorry, I know you don't like mornings, but we need to get up. I have an appointment with Amelia at 9 then the wheelchair appointment..."
"Right, that's today, busy day. We'll get up soon" Carina mumbled as she snuggled closer to Maya.

10 minutes later Maya convinced her to get up and they started their morning routine. Move all the pillows positioning her, lay her on her back, catheter and ostomy care, binder, get dressed, sit up, transfer to the wheelchair, strap her in. Then Carina gave her a hair brush, with an ez-hold to attach it to her hand, and she brushed her hair while Carina got dressed and did her hair. Then Carina put Maya's hair up so it was out of the way for brushing her teeth which was next, another ez-hold on her toothbrush meant Maya could brush her teeth independently. Finally they had breakfast and headed out to the cab they had booked to go to the appointment. They either had to take a wheelchair cab, a bus or walk whenever they wanted to go somewhere because there's no way to get a power chair into a vehicle that hasn't been adapted to have a ramp or lift.

They got to the hospital in time for the appointment and went to CT to get the scans she needed for the appointment. After the scans they went to find Amelia.

"Hey! My favourite patient!" Amelia says as she  sees them
"Hi Amelia, don't let you other patients hear that" Maya says going up to her
"Hi" Carina says
"Did you already get new scans?" Amelia asks
"Ya, just finished" Maya tells her and they head to a room where Amelia reviews the scans.

"You're scans look good. Now I'm going to examine your neck, so I'll take off the brace and check for any pain along your spine and then check your range of motion" Amelia explained "can you get up here and sit on the table?" She asks
"I might need help balancing but I can sit up there" Maya tells her and brings her wheelchair over next to the table then she moves her hand off the joystick and tries to change the settings. She still has no hand function and not a lot of function in her wrist so it takes a while to get her hand on the button then she tries to push the button but instead her hand falls off the controls.

"Stupid tiny buttons" she mutters "Carina can you get it, I'm trying to raise the chair"
Carina gets the button for her to change the settings then helps her out her hand back on the joystick. Maya raises the chair so it's at the same height as the exam table then Carina unbuckles her and moves the armrest before helping her transfer. Once she gets her arms down to hold herself up Carina let go and moved the wheelchair out of the way.
"Ready?" Amelia asks
"Yes"
"Alright, I'm going to take the brace off, try not to move your neck yet. It will be sore and stiff and it might be hard to hold your head up, that's just because you haven't used these muscles in so long" Amelia explains then takes the brace off. She feels along her spine then starts asking her to try different movements. Maya tries turning her head and starts falling over so Carina comes over to hold her up.

"Ok, that's all I needed to see" Amelia says as she puts the brace back on. "You can start taking the brace off a few times a day, start with no more than 30 minutes at a time. It's normal for your neck to be sore, take pain meds if you need to. I'm going to make sure your PT sees the scans and I'll talk to them. They'll give you exercises to work on strengthening and range of motion. You have another appointment with me in a month but you both know you can call me if you have any questions"

"Ok, thanks" Maya says
"Last thing, like I said its normal for your neck to be sore but if there's any sudden or intense pain you need to put the brace back on immediately and come to the ER"
"Is it ok to take the brace off? Am I just going to hurt my neck again?" Maya asks, nervous when Amelia mentioned coming to the ER
"The best way for you to keep healing now is to start moving and using those muscles again, that will help prevent another injury. Just don't push it. I'm just saying that because if you think something's wrong its best to come get it checked out, it's probably nothing but if something was wrong and you ignore it it could get worse, but if you come in then we can fix it" Amelia tells her
"Ok"

Carina helps Maya back into her chair then they say goodbye to Amelia and head to the next appointment. They go to the rehab wing and a woman's waiting at the front desk.
"Hi, Maya right?"
"Yes, hi"
"My name's Kate, I'm the coordinator for the seating clinic"
"Nice to meet you"
Kate shakes hands with Carina who introduces herself then they follow her to a room. There are 5 other people already in the room, Kate introduces everyone. There's a physical therapist, occupational therapist, someone who manages equipment for the rehab place, someone from an equipment company, and someone taking notes.

"Can you get on here so we can measure you?" Kate asks, pointing at the blue padded table. Maya transfers to the table with help from Carina
"Do I need to sit up or lay down?" Maya asks
"Start sitting up, I'm going to measure for seat width and we can look at what support you'll need from the backrest. Can you sit on your own?"
"With my arms supporting me for a while but I don't have any core function yet" Maya said as she got her hands out and Carina let go so Maya could show what she can do on her own
"Ok, can you lay down now and I'll measure your legs"
Carina helped her lay down and lifted her legs up onto the table. Kate measured her then Carina helped her sit up again and sat behind her so Maya was leaning against her instead of having to transfer back to the wheelchair.
"Ok, I got all the measurements. That tells us the size of chair you need, width, depth and how far off the ground it should be for the footrest to be in the right spot. The first decision you need to make is if you want a folding or ridged frame"
"I don't know" Maya says
"What are the differences?" Carina asks
"Folding frame will fold up smaller for storage or putting in a car, ridged frame's are lighter and more durable because they have less moving pieces" Dan, the guy from the equipment place, explains
"Would a ridged frame fit in a car?" Carina asks
"It would fit in most cars, the wheels come off and the backrest folds down. It just might not fit in the trunk of small cars" Dan explains
"What do you think bambina?" Carina asks Maya
"I don't know, I don't know any of this stuff" Maya tells her
"For long term, everyday use you usually want a light chair. Especially with your arm function, I'd recommend a ridged frame, its easier to push yourself in a lighter chair and you don't want anything breaking" Jane, the OT, says
"Ok, I guess ridged frame then"

Then they started talking about backrests and got her to try a bunch of different chairs. Eventually they decided that she'd trial some different chairs then they'd have another meeting. So Dan was going to get a chair ready and then call them, she'd get to have it at home for a few days and use it all the time to see if it worked. After she'd tried a bunch of chairs she'd say what she liked and didn't like about each one. Finally the meeting was over and they went home. Maya was exhausted, mentally and physically, from both appointments but mostly the seating clinic. They didn't have anything else to do that day so they mostly just hung out on the couch.

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Sorry if this chapter sucked, I wrote it then most of it got deleted and I had to rewrite it.
Also I have no idea what seating clinics are like for adults or anywhere other than in my town so this might not be accurate but it is from my experience. I'm a respite worker and I have gone to seating clinic with 2 different boys I work with. It's really overwhelming, when I went there were 7 professionals(all that I listed in the story plus a social worker who helps with funding and stuff like that) plus me, the kid and a parent in a small room. I have a lot of knowledge about equipment and both parents a went with had been to a lot of seating clinics before and we still struggled and didn't feel like we were being heard. I can't imagine what it would be like for someone going the first time with no knowledge about equipment and it kind of scares me to think of what chair you'd end up with because it takes a lot of advocating to get what you need. It's also a very long process and takes months to get anything.
Anyways, I just wanted to write about this to spread a bit of awareness about this process. (Also I do love everyone at my local therapy centre, its just this specific thing is difficult)