Newest Update

Since my last post, I was back in the hospital for another respiratory infection. It wasn’t pneumonia, but it was bad enough for me to be admitted. I went into the emergency room and was admitted on August 5, then was discharged on August 9. They sent me home for 2 days then I was back in the ER on August 11 for 6 days. The reason I went back into the hospital was because my mom, nurses, and I all repeatedly told them I wasn’t ready to go home, but they kicked me out anyways. 

Before leaving, I was still feeling sick and having all the same symptoms. Although the hospital said, “they recommended that I continue current antibiotic measurements and that I could do that at home under the supervision of my nurses.” I’m feeling much better now and have been healthy since. I went home with a PICC line (it’s like an IV, but it is a type of catheter to access bigger veins.) It can also be left in for a longer period, but there is a dressing on it and needs changing once a week (mine was by the crease of my elbow.)

One thing that happened this time is I also had issues, although it wasn’t with my wheelchair, but my ventilator attached to my wheelchair. My vent plugs into my wheelchair which charges it and is also like an “external battery” for it. The vent internal battery lasts about 30-40 minutes and when it’s running off my wheelchair, it lasts as long as my wheelchair battery is. At some point at time while I was there, my vent started beeping “low battery,” so we used the plug-in to the wall instead.

Before I went home, I had to have the wheelchair company come to the hospital to figure out if they could fix whatever was broken. He found that the converter box (a black box that the wheelchair battery and ventilator battery plug-in to) was crushed. I’m sure at some point when I was repositioning in my chair, I must have leaned into it. Then, over time the box continued to break down and it chose that moment to quit working. Anyway, at first, he said they would have to order a whole new one, but then she was able to fix it on the spot. About a week later, someone came to my house and replaced the box.

Since being home I’ve been staying low key, writing poetry, getting outside, taking Everette for walks. I’ve also been continuing to go to ABLE whenever I can. Nursing lately has been a little spotty and it doesn’t work to go on days when there isn’t one. The best part about going is learning new things and gaining more movement. I took a video of my latest progress and will share it in a separate post. I'm always amazed at myself and have been told that by others.

If everything works out, I will continue to go there as long as I can. Nothing can stop me from reaching my dreams. Over time I have gained more arm movement and core balance. The one thing that stops me short on some days are my arm exercises. I get major pain in my neck and arm sockets. It could be a combination within the arm exercises and my wheelchair. I’m planning on seeing a doctor about my arms coming up soon.

The most exciting news since my last post is that my sister is due again in October. Now I will be an aunt to 3 girls!

I am hoping to update sooner than 4 months, as my posts have become longer and random. Although every day I’m new writing poems and entering them into contests. I have shared some of my recent ones below. Thank you for your patience.

Jenni

Natures Grace’s

Sunlight dances piercing through cirrus clouds

rays of light shine causing shadows to scream loud,

Like molten cream the sky is full of many hues

emitting molecules scattering violets and blues

Feeling a heaviness lumbering tirelessly through

evergreen trees that stick together like glue,

Strong roots run deep entangling underground,

sending secret messages beneath the loamy ground

As brisk breezes brushes across center retrieves

running its fingers between the crimson leaves

Lifeforms unpredictability like ribbons of sound

breathing in the crisp air from oxygen around

Times when there are changes between seasons,

with lessons at the same time as life’s reasons

Tapestry of nature whispers secrets in the streams

carrying them around Earth’s beautiful bright beams

Crossing an Intersection

At an intersection to cross the street

when the light turns green “what should I do?”

I’m in a wheelchair trying to be discreet,

I wish I could walk when the sign tells me to

There is no wheelchair symbol flashing,

just words saying “walk” or “don’t walk,”

when I see that I just start laughing

there should be a voice that starts to talk

Wondering what people would think,

if there were words saying “roll” or “don’t roll,”

they might get a kick or need to rethink,

maybe they’d get confused or lose control

Figuring out how to have it both ways,

for walkers and rollers lessening the confusion

there could be a custom-built phrase,

saying “cross” or “don’t cross” for inclusion

Who is following me?

Getting smaller as I charge for it,

growing taller as I walk away,

constantly creeping beside me

lurking in my every movement

Shifting shapes in the sunlight

dimming within the moonlight

learning to accept the fact,

that I can’t get away fast enough

Feeling fearful and empty inside,

it always has a hold of my sight,

despite all the dark there is light

behind my shadow to show itself