It’s been a year since our Transplant Surgeries! I can’t believe it’s been that long! It’s crazy how time can both drag by and zoom along.
Covid has thrown a curve ball for us this year. Because Jaydon’s white blood cell count was so low, he had to have several infusions done to bring them back up. They’re finally back where we want them. But, because of the issues he’s had, he’s been unable to work since February/March. I’ve continued working, taking as many precautions as I can so I don’t bring the creeping crud home to my family.
Jaydon had his one-year-anniversary appointment. Overall, he’s doing well. He’s got tons of energy and wants to do all the things. His new kidney is working quite well. We’re really excited about it. He loves being outside IF he’s given a task he enjoys. Otherwise, he just wants to sit in his room.
I had my anniversary appointment as well. At first, I was quite disappointed with my lab results. My creatnine was flagged as high at 1.3. Prior to transplant, it was .96. But as I was talking to the doctor, they told me they expected a 30% rise in the creatnine levels so I’m right on target. I’ll be doing a few things to make sure my kidney is working correctly. On the whole, I’m doing well. I can tell when I’ve done too much.
I don’t feel any different now than I did a year ago. The only difference is that I can’t take Ibuprofen for headaches or body aches etc. Instead, I’ve found that dark chocolate is a wonderful substitute. The kids have been very helpful in keeping my supply fresh. They’ll eat some and then tell me I need more chocolate. Helpful, right?
Being able to watch and see how much Jaydon has changed over the past year has been wonderful. The transformation has been great to watch. There have been challenges, but they’ve been overwhelmingly minimal.
Wednesday, July 1, 2020
Wednesday, June 26, 2019
Make-A-Wish Trip
Our family was able to spend a week on
the island of Kauai courtesy of the Wyoming and Hawaii Chapters of Make-A-Wish.
While in the tropical paradise, they were able to enjoy a variety of
activities. The pilots on United Airlines invited Jaydon into the cockpit for a
pre-flight check. The family enjoyed a visit to the Fern Grotto followed by a
luau with the Smith Family Garden Luau. Kauai Surf School provided a fun-filled
day in the waves learning how to surf. Kauai Backcountry Adventures provided a
relaxing adventure while riding tubes through the sugar cane irrigation canals.
The family boarded a catamaran named Lucky Lady for a tour of the Na Pali coast
with Kauai Sea Tours. They were also able to snorkel with sea turtles and
several types of fish. In addition, the Grand Hyatt Resort and Spa provide
amazing rooms with beautiful vistas and hours of fun in the pools.
This trip would not have been possible without the generosity of Make-A-Wish donors. We will hold all the memories close to our hearts. THANK YOU!
Monday, May 13, 2019
Summer of Surgeries
As if the planned surgeries weren't enough, we had to go and add yet another round to our crazy, hectic schedule. The summer started with a bang, literally.
My husband had a mishap and fell through the floor of a barn loft. His compression, spiral fracture of his lower leg caused an immediate emergency surgery to stabilize the bones and bone fragments. This injury will require at least one additional surgery and possibly several more. I’ll spare you the pictures, but the doctor said it looked like a box of chiclets were sprinkled throughout the X-rays.
I have official approval to be the donor for my son’s kidney transplant! We’re working with the transplant teams an it looks like the transplant will occur in early summer. It’s overwhelming and exciting.
My oldest will be coming home from his mission the first week of June. Many of you remember his nemesis, the paintball. The injury sustained during that fateful game last year has once again risen through the ranks. He needs at least one more surgery to correct his eyesight as much as we can. This surgery has yet to be scheduled.
And last, but certainly not least, my arm. This has been a fun injury. I had a cabinet door fall on me at work. I sustained an injury that can only be described as “Carpal Tunnel of the Funny Bone.” There’s a medical term for it, but this description is adequate. Basically, my arm from my elbow to my fingertips is continually numb, much like when your foot falls asleep. We’re working with the surgeon to coordinate the surgery around everything else that’s happening.
So many fun things will be happening in the coming months. Instead of focusing on all the rough patches, we’re choosing to focus on the fun. My second son is graduating from high school. My oldest is returning from his mission. I’m in the midst of college classes; hoping that I can pass. And, we’re going to Hawaii! This trip will be a chance for healing. It will be a wonderful escape from reality. It will be fun, a time to revitalize and focus on the most important things in our lives - our family. Everything else will fall into place.
As I have seen numerous times, there is ALWAYS a silver lining. We just need to look for it. Even though things are crazy busy, they are crazy wonderful too. Focus on the good and you’ll get through the trials.
PS... Many people have asked how they can help. There's a GoFundMe here and several fundraisers that are and will be happening. Prayers and good vibes are also VERY appreciated!
Sunday, March 24, 2019
Bridge the Gap – Donate Life
Organ
donation can change the lives of the donor and recipient forever.
According to the organ donation website, Donate Life, there are over
one hundred thousand hopeful recipients across the nation currently
waiting on the transplant list, with more people added daily.
Unfortunately, Department of Motor Vehicles records indicate there
are only about seven thousand registered donors. Each post-mortem
donor can save up to eight lives; the difference between the two
numbers is heartbreaking. Well over half of the recipients will not
receive help in time. A living donor can donate bone marrow, kidneys,
and partial livers. Myths
surrounding becoming an organ donor keep people from signing up to
donate because they worry about being qualified, donations only go to
the privileged, and they fear they won’t be able to have an open
casket funeral.
The
first myth is “I’m not qualified to be a donor because of age or
illness or I have to be dead to donate.” Nothing could be further
from the truth. There are two types of donors, living and deceased.
Living donors go through a rigorous evaluation to determine if they
are a match and adequately healthy to donate. Deceased donors must be
declared to be brain dead in order for the surgical team to procure
the organs. In each case, the medical team will evaluate medical
records and personal history and will make the determination if the
donor is a viable candidate. The oldest recorded donor was
ninety-three years old.
Another
fear potential donors have is only rich people get the organs.
Fortunately, the list is a computerized system. Recipients are ranked
by illness, immunity match, geography, and the length of time on the
list. Using the computer system, the medical teams will match the
best possible recipient to that organ. Race, religion, and wealth do
not play a part in the selection process. The entire process is made
to be as fair as possible.
Another
myth often encountered is, “I won’t be able to have an open
casket funeral if I donate.” The surgical team is exceptionally
good at their job. The medical staff almost reveres the final moments
of the deceased donor. The transplant team works very hard to
preserve the looks of the donor out of respect for the donor and for
the family. Utmost care must be taken in the removal of the organs so
that they will be viable once they are transplanted.
As
heartbreaking as the disparity between donors and recipients is, it
is truly beautiful what happens when a match is made. Videos of
recipient’s reactions float around the internet. My experience
isn’t recorded on video, but it’s no less touching. In October,
we were in the process of putting my son on the kidney transplant
list. We’d just submitted the paperwork and the testing. A friend
of mine shared a story on social media where a young child had
drowned at a party. He had been life-flighted to a nearby Children’s
Hospital. While he was there, it was determined that he had no brain
activity. It was heartbreaking. The mom shared that they were in the
process of donating her child’s organs. I expressed my thanks for
her selfless act as we would be on the recipient side shortly. Her
family immediately contacted me and offered to be the donor for my
son. My heart soared even as it broke for this family. Unfortunately,
this match didn’t work out for us, but it did for another child.
Just the thoughtfulness of this family changed my life forever. Now
I am not only an advocate for organ donation, I am a match for my
son. I get to give him the gift of life – again.
Organ
donation is not a mind thing. It is a heart thing; it is how a donor
feels about donation. It is how the donor feels about being the one
who can literally save another person’s life. It is not enough to
merely click the box on the driver’s license form. The donor must
tell family members. Put it in writing and make the wish known to
give the gift of life. Step forward as so many others have done. Step
forward and make the difference for someone. Push the myths
surrounding organ donation aside. Be someone’s hero. Sign up to be
an organ donor today.
Citations
“Frequently
Asked Questions.” DonateLife
https://www.donatelife.net/faq/
March 1, 2019.
“Organ,
Eye and Tissue Donation Statistics.” DonateLife
https://www.donatelife.net/statistics/
March 1, 2019.
“The
Truth About Organ Donation.” ZdoggMD.
August 2, 2018.
https://zdoggmd.com/organ-donation/
March 1, 2019.
Notes & Acknowledgements
This is a paper I wrote for a college essay. I got 195/200 so a 97.5%. Huge thanks to Betsy Love for being there and helping me through the editing and revising process. I don't think this paper would have been quite as strong without your help!
Wednesday, March 13, 2019
Flash Fiction - Arrested
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: We could get arrested for this
Lightning flashed across the clouds, illuminating the dry creek bed for barely a moment. “Are you sure about this?” I hissed just as Jackson struck a match.
A sardonic grin spread across Jackson’s face. “Yeah. It’ll be fun.”
“We could get arrested for this.”
Jackson shrugged. “That’s what makes it fun.”
His laughter sent prickles of fear down my spine. The rag in the bottle crackled as flames licked at the gasoline.
“You ready?”
I shook my head, unable to force the words past the lump in my throat.
The bottle flew through the air, exploding against the car. “Run!”
Saturday, February 2, 2019
Ode to Mountain Dew
Oh
my darling Mountain Dew, how I long for the feel of you across my lips. Your
fizzy, sugary goodness is a boon to my soul. Your bubbly personality is almost contagious.
The hiss as your pent up energy escapes the bottle is music to my ears. I would
that your citrus and sugar-laden carbonation could flow like blood in my veins.
You are the elixir of life.
I
love how you glow when lights shine across your plastic contours. You can make
a headache flee in terror, and always brighten my day with just a single sip.
The combination of your coloring and the bottle you reside in create my
favorite color, the color of genius. You, my friend, are genius in your
flavoring.
The
doctors have told me I need to cut back on my caffeination and carbonation as I
prep to be a kidney donor. I detest being away from you. No other beverage is
as wonderful as you. Other sodas and juices can’t hold a candle to you. Alas, we must part ways
for a time. It’s me, not
you. It could never be you. I’ll miss your soothing comfort and the fizzy
moments we share as you flow across my lips. Oh, Mountain Dew, I’ll crave your
nearness. We’ll see each other again, just not as often as we have lately.
I’ll long for your comfort and
closeness. Until we meet again, my darling, I’ll gaze longingly in your
direction as I pass your residence in the cooler door of the convenience store.
I must keep my distance because being close to your perfection is too tempting
for a mortal like me. The only way I can be strong enough to resist you is to
avoid looking at you. Once I do, I’ll remember your siren song and how the ice
cracked as you were poured into the cup. The pull of your love will once again
be too much and you’ll be in my arms once again.
For
now, I’ll be strong. For now, you and I
will be apart. I’ll temporarily find solace in my cup of ice water, forever
knowing the inferior beverage is not the same. Tis only for a little while, my
love. Soon, we’ll be together again. Soon, I’ll cave and give into the call of
your song.
*****
I’ve been waiting on pins and needles, waiting for my grade on my Mt Dew essay. My teacher finally graded it last night. It was awesome! I got 100% on it with loads of compliments. From my English teacher:
“There’s lots of creativity in your essay. I feel like you had fun writing it. The tone was fun & passionate. It’s almost ridiculous but comes across really well. I’ve highlighted some of the fun, sensory details in your essay. I could have highlighted a lot more, but I didn’t want to turn your whole essay green. You, obviously, are a seasoned writer. You know what you’re doing and everything is really clean. Really good, fun essay to read. Good luck giving up your Mt Dew and I hope everything goes well!”
So, now I’m sitting here thinking, “Man! I shouldn’t have done so well on that first essay! Now I’ll have to hit it out of the ballpark for the rest of the 10 weeks! Gah!”
It’ll be fine... I'm sure it'll be fine... probably...
Moving Forward - College
There's never been a good time to go back to school, to pursue my education, to move forward with bettering myself.
Over 20 years ago, I dropped out of my last semester of college to move to Texas with my husband. He'd just landed an internship. It was a great opportunity. So, we packed up and moved. I was 3 classes - 9 credits - shy of completing my Associate's Degree.
Fast forward several years. I had small kids but I really wanted that degree. I craved that piece of paper. So I enrolled in Salt Lake Community College and took one class at a time until I'd completed those classes. I called my alma mater and was told I'd need to take another 21 credits (from them) in order for those credits to transfer and be counted toward my degree. That seemed like an insurmountable obstacle so the degree was shelved again.
Fast forward again... Last year, I was looking at my 4yo and thinking "Only one more year of her at home. One more year and I'll close the chapter of having little people around all the time. One more year! What am I going to do with myself?" And, it'd be two more years until I could feasibly work full time outside the home because of the kindergarten schedule.
My thoughts turned again to my education. I called my alma mater. The news they gave me was less than heartening. In addition to having to pay out of state tuition, I'd need to start all over again because my credits were from an "obsolete degree track." I cried. I got frustrated. Then, I started looking for other options.
I discovered PathwaysConnect. My sweet sister-in-law had gone through the program and she gave glowing reviews. I looked over the possible degrees and prayed. And then I pushed the button to sign up. As a result, I'm working on my third semester of the program. It's been a challenge and a sacrifice but it's been worth it. Upon completion of this semester, I'll have a certificate of completion. Then, I'll transfer to BYU-Idaho where I'll pursue a degree in Business Management with a minor in Marketing.
I absolutely adore my Pathways family. They are supportive and fun and amazing. I'm learning SO much from all of them.
Wednesday, January 30, 2019
Flash Fiction - Nickname
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: She finally told me how she got her nickname...
Bile threatened to burst from my throat. I sat, my eyes wide. I should be thrilled or excited or even awestruck. Instead, all I felt was disgust. The story she’d conjured was horrifying.
She sat across from me, waiting for my response.
I grabbed the water and downed the whole glass, hoping to rebuke the vomit that threatened. I should be happy because she finally told me how she got her nickname.
“Uh, that’s great.” I choked.
A smirk crossed her lips. “Don’t think I can’t read you.”
“You can?” I glanced around, hoping for rescue from anywhere.
“Like a book.”
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: She finally told me how she got her nickname...
Bile threatened to burst from my throat. I sat, my eyes wide. I should be thrilled or excited or even awestruck. Instead, all I felt was disgust. The story she’d conjured was horrifying.
She sat across from me, waiting for my response.
I grabbed the water and downed the whole glass, hoping to rebuke the vomit that threatened. I should be happy because she finally told me how she got her nickname.
“Uh, that’s great.” I choked.
A smirk crossed her lips. “Don’t think I can’t read you.”
“You can?” I glanced around, hoping for rescue from anywhere.
“Like a book.”
Wednesday, January 23, 2019
Flash Fiction - The Thief
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: I was known for stealing from my friends
Shrieks cut through the room.
“No! This is not going to work!”
I shook my head. This is never going to work. No one is getting along. I grimaced before raising my hand. “I’ll do it.”
“Starla? Not her! We need someone honest to represent us.”
Another voice joined the melee. “Why not? Maybe a thief can con a thief.”
I pursed my lips. My hands clenched into fists. I was known for stealing from my friends. It was never anything big. Practical jokes were my specialty. My lips quirked into a smile. I’ll teach them for doubting my skills…
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: I was known for stealing from my friends
Shrieks cut through the room.
“No! This is not going to work!”
I shook my head. This is never going to work. No one is getting along. I grimaced before raising my hand. “I’ll do it.”
“Starla? Not her! We need someone honest to represent us.”
Another voice joined the melee. “Why not? Maybe a thief can con a thief.”
I pursed my lips. My hands clenched into fists. I was known for stealing from my friends. It was never anything big. Practical jokes were my specialty. My lips quirked into a smile. I’ll teach them for doubting my skills…
Wednesday, April 11, 2018
Flash Fiction - An Hour
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: He had an hour to get home
The firelight illuminated the hands on his watch. He had an hour to get home. The beer bottle slipped through his fingers and shattered on the rocks. He climbed behind the wheel and stomped on the clutch. The truck rolled over the knoll and bounced down the hill. Branches scraped the new paint while debris threatened to rip apart the undercarriage. His knuckles turned white on the steering wheel as his eyes bulged from their sockets. Water splashed over the cab and the truck lurched as it came to a stop in the driveway.
“What happened to my new truck?”
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: He had an hour to get home
The firelight illuminated the hands on his watch. He had an hour to get home. The beer bottle slipped through his fingers and shattered on the rocks. He climbed behind the wheel and stomped on the clutch. The truck rolled over the knoll and bounced down the hill. Branches scraped the new paint while debris threatened to rip apart the undercarriage. His knuckles turned white on the steering wheel as his eyes bulged from their sockets. Water splashed over the cab and the truck lurched as it came to a stop in the driveway.
“What happened to my new truck?”
Wednesday, March 21, 2018
Flash Fiction - Home
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: He was going back
Devin Howlernell shook his head as he surveyed the monitors. “Are you sure?”
“Absolutely. The revolution will cause enough of a distraction for you to get away.”
“And everything is ready?”
The green tinged man nodded. “You’ve made all the preparations yourself.”
“Add enough for three other people.”
The man lifted his forehead where his eyebrows should have been. “You’re sure?”
“As sure as I can be.”
“As you wish, sir.” The man shuffled from the room, making notes on the device he held in his hands.
The grin spread across Devin’s face. He was going back. Home. To Earth.
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: He was going back
Devin Howlernell shook his head as he surveyed the monitors. “Are you sure?”
“Absolutely. The revolution will cause enough of a distraction for you to get away.”
“And everything is ready?”
The green tinged man nodded. “You’ve made all the preparations yourself.”
“Add enough for three other people.”
The man lifted his forehead where his eyebrows should have been. “You’re sure?”
“As sure as I can be.”
“As you wish, sir.” The man shuffled from the room, making notes on the device he held in his hands.
The grin spread across Devin’s face. He was going back. Home. To Earth.
Wednesday, March 7, 2018
Flash Fiction - The Window
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: The window slammed shut
“Shhh! We’ve got to be quiet!” The black-clad men slipped silently into the yard. Harry picked up several small pebbles and flicked them at the dark window. The tiny pings barely registered in the still night air. “Come on…” He flicked another stone and winced when it hit the glass.
Lights blazed through the curtains just before the window opened. “What! Harry? This’d better be good!”
The mariachi band appeared on the grass and started their set. Harry smiled up at her, a single rose in his hands. His heart shattered as the window slammed shut. His shoulders slumped.
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: The window slammed shut
“Shhh! We’ve got to be quiet!” The black-clad men slipped silently into the yard. Harry picked up several small pebbles and flicked them at the dark window. The tiny pings barely registered in the still night air. “Come on…” He flicked another stone and winced when it hit the glass.
Lights blazed through the curtains just before the window opened. “What! Harry? This’d better be good!”
The mariachi band appeared on the grass and started their set. Harry smiled up at her, a single rose in his hands. His heart shattered as the window slammed shut. His shoulders slumped.
Tuesday, March 6, 2018
Medical Marathon
It's almost unheard of to have this many appointments scheduled on the same day, stacked so well - but it happened.
The Medical Marathon actually began the night before as we made plans and got everything ready to go. We drove through the thinning darkness toward Salt Lake City. Amazingly, the lab had the order. Usually, I’m on the phone for at least 30 minutes trying to get the order faxed. But today, it was there. They called Jaydon back quickly and within 5 minutes, it was done. We ambled across the bridge to the main hospital. My 4yo ran ahead, laughing. We got checked in - after a minor computer glitch - and they said, hey! We can take you back now. Do you want to wait? Um, NO! We’ll take the NOW appointment! Everything went quickly and the fuzzy images on the screen looked good - at least to me.
We checked in at Urology and they were running behind so we went to the cafeteria and hung out for a while. The 4yo was so full of energy and life. There was so much laughter. Jay even got some of the cute custodial staff to give him some tamales by laughing and joking with them. They were SO good!
In Urology, I was almost afraid for that appointment because for some unknown reason, we missed scheduling an appointment. They didn’t have the schedule up at our last appointment and I didn’t get a phone call to schedule it and I forgot to make said phone call. But, nothing was said about that. The ultrasound looks so much better than it did a year ago. He’s doing better with the regular day to day maintenance. They questioned whether to change up a couple of his meds but decided against it - pending what Transplant would tell us.
We had to hustle back across the bridge for the remainder of the appointments. Jay told me I didn’t need to run, but since the 4yo was running, I was power walking. We checked in for the appointment where I discovered an exploded fry sauce packet in my laptop bag. Thankfully, it was in a different pocket than my laptop was in. All the patients and staff and I had a really good laugh over it. “Oh! Thanks so much for the fry sauce in my laptop bag. I love you SO much, honey!” Jay was cracking up - especially when they brought me a package of wet wipes and some washcloths.
Dietary told us that Jaydon had grown taller. He’s 5 ft 6 inches tall - well over a foot of growth in just over a year. But, he’s down 3 lbs. That puts him in the 10th percentile for growth - down from the 20th percentile that he has been in. He needs to focus on eating ALL the fatty things and we might need to start on supplements again. We’re almost positive that the loss was due to the gastroenteritis (stomach flu) we all got a few weeks ago. It’s wicked stuff.
Nephrology came in next. Jaydon’s kidney is at 22% function, down from 24%. His creatnine is at 3.1 up from 2.8 last time. We took his blood pressure several times. It’s high. Not like high high. But high for a kidney-kid. High blood pressure affects the kidney in an adverse way. We adjusted his meds and were asked to get his BP checked at least every other week. I’m hoping the EMTs want some practice and will help me out with this.
And then, THE appointment… The one with the Transplant Coordinator. All the feels hit. Disbelief that this is really happening. Fear, unsurity, and then peace. We started by me giving a brief history of his medical issues so the coordinator knows how much I/We understand. I think I passed, probably. Ugh, this appointment was hard for me. Jaydon “slept” through it. Jay asked loads of questions. Me? I took notes.
Here’s the brunt of it…
We’ll be starting all the transplant paperwork before September because if we get Jaydon on the transplant list before his 18th birthday, he gets pediatric preference. We’ll be deciding whether to go with a living donor or a deceased donor. Living donors tend to do better overall and no one has to die for his to happen. So, we’re leaning that direction. This is what we know about the donors for Jaydon. They need to be between 18-50 years old. Older donors COULD be taken if we’re willing to do a “donor swap” “Chain Donation” situation. Basically, our donor donates to an older recipient while that patient’s younger donor donates to Jaydon.
It’s really a hurry-up-and-wait type of a situation. It can take 3-4 months for him to get on the list. It can take 8-12 weeks for a donor to be matched. And then the whole donation process.
Part of me wants to get it going NOW and part of me wants to wait til September - to put off the inevitable. There are a LOT of breathing moments. Moments taken to soak it all in. Moments where I just break down. And it’s okay. It’ll all be okay. We’re adjusting to the new normal. I’ve been doing a lot of praying. God’s love is surrounding me. It’s hard and we’ll get through it. God has never given me a trial that HE can’t help me through. I’ve got a 100% track record of getting through the hard things. It might not have been a pretty path, but it’s a through-path.
The event that was just over the horizon has now become the mountain in the distance. We can see it and it’s getting closer. And we’re right back to what I’ve been telling people for quite a while. He needs a transplant BUT it’s not today and it’s not tomorrow. And for that, I’m thankful!
The Medical Marathon actually began the night before as we made plans and got everything ready to go. We drove through the thinning darkness toward Salt Lake City. Amazingly, the lab had the order. Usually, I’m on the phone for at least 30 minutes trying to get the order faxed. But today, it was there. They called Jaydon back quickly and within 5 minutes, it was done. We ambled across the bridge to the main hospital. My 4yo ran ahead, laughing. We got checked in - after a minor computer glitch - and they said, hey! We can take you back now. Do you want to wait? Um, NO! We’ll take the NOW appointment! Everything went quickly and the fuzzy images on the screen looked good - at least to me.
We checked in at Urology and they were running behind so we went to the cafeteria and hung out for a while. The 4yo was so full of energy and life. There was so much laughter. Jay even got some of the cute custodial staff to give him some tamales by laughing and joking with them. They were SO good!
In Urology, I was almost afraid for that appointment because for some unknown reason, we missed scheduling an appointment. They didn’t have the schedule up at our last appointment and I didn’t get a phone call to schedule it and I forgot to make said phone call. But, nothing was said about that. The ultrasound looks so much better than it did a year ago. He’s doing better with the regular day to day maintenance. They questioned whether to change up a couple of his meds but decided against it - pending what Transplant would tell us.
We had to hustle back across the bridge for the remainder of the appointments. Jay told me I didn’t need to run, but since the 4yo was running, I was power walking. We checked in for the appointment where I discovered an exploded fry sauce packet in my laptop bag. Thankfully, it was in a different pocket than my laptop was in. All the patients and staff and I had a really good laugh over it. “Oh! Thanks so much for the fry sauce in my laptop bag. I love you SO much, honey!” Jay was cracking up - especially when they brought me a package of wet wipes and some washcloths.
Dietary told us that Jaydon had grown taller. He’s 5 ft 6 inches tall - well over a foot of growth in just over a year. But, he’s down 3 lbs. That puts him in the 10th percentile for growth - down from the 20th percentile that he has been in. He needs to focus on eating ALL the fatty things and we might need to start on supplements again. We’re almost positive that the loss was due to the gastroenteritis (stomach flu) we all got a few weeks ago. It’s wicked stuff.
Nephrology came in next. Jaydon’s kidney is at 22% function, down from 24%. His creatnine is at 3.1 up from 2.8 last time. We took his blood pressure several times. It’s high. Not like high high. But high for a kidney-kid. High blood pressure affects the kidney in an adverse way. We adjusted his meds and were asked to get his BP checked at least every other week. I’m hoping the EMTs want some practice and will help me out with this.
And then, THE appointment… The one with the Transplant Coordinator. All the feels hit. Disbelief that this is really happening. Fear, unsurity, and then peace. We started by me giving a brief history of his medical issues so the coordinator knows how much I/We understand. I think I passed, probably. Ugh, this appointment was hard for me. Jaydon “slept” through it. Jay asked loads of questions. Me? I took notes.
Here’s the brunt of it…
We’ll be starting all the transplant paperwork before September because if we get Jaydon on the transplant list before his 18th birthday, he gets pediatric preference. We’ll be deciding whether to go with a living donor or a deceased donor. Living donors tend to do better overall and no one has to die for his to happen. So, we’re leaning that direction. This is what we know about the donors for Jaydon. They need to be between 18-50 years old. Older donors COULD be taken if we’re willing to do a “donor swap” “Chain Donation” situation. Basically, our donor donates to an older recipient while that patient’s younger donor donates to Jaydon.
It’s really a hurry-up-and-wait type of a situation. It can take 3-4 months for him to get on the list. It can take 8-12 weeks for a donor to be matched. And then the whole donation process.
Part of me wants to get it going NOW and part of me wants to wait til September - to put off the inevitable. There are a LOT of breathing moments. Moments taken to soak it all in. Moments where I just break down. And it’s okay. It’ll all be okay. We’re adjusting to the new normal. I’ve been doing a lot of praying. God’s love is surrounding me. It’s hard and we’ll get through it. God has never given me a trial that HE can’t help me through. I’ve got a 100% track record of getting through the hard things. It might not have been a pretty path, but it’s a through-path.
The event that was just over the horizon has now become the mountain in the distance. We can see it and it’s getting closer. And we’re right back to what I’ve been telling people for quite a while. He needs a transplant BUT it’s not today and it’s not tomorrow. And for that, I’m thankful!
Thursday, February 15, 2018
Flash Fiction - GONE!
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: She chased it, forlorn
Sherry looked through her bags. Her fingers flew, each moment becoming more and more desperate. “Where is it? Please don’t say I left it home.” She glanced up, seeing the cab pull away from the curb. A glimmer of pink waved at her from the window - mocking her.
“No!” She jumped to her feet, waving her arms as she chased after it. Desperation etched across her face.
“Honey, it’s gone.”
Sherry shook her head. “No. How are we going to survive without it?”
“It’s just a binky. We’ll get another one.”
Her crazed gaze landed on him. “You don’t understand!”
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: She chased it, forlorn
Sherry looked through her bags. Her fingers flew, each moment becoming more and more desperate. “Where is it? Please don’t say I left it home.” She glanced up, seeing the cab pull away from the curb. A glimmer of pink waved at her from the window - mocking her.
“No!” She jumped to her feet, waving her arms as she chased after it. Desperation etched across her face.
“Honey, it’s gone.”
Sherry shook her head. “No. How are we going to survive without it?”
“It’s just a binky. We’ll get another one.”
Her crazed gaze landed on him. “You don’t understand!”
Wednesday, February 7, 2018
Flash Fiction - Dolls
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: He’d been told dolls were for girls
“Playing with dolls again?” Luis chortled.
Gabe turned away, squaring his shoulders. He took a deep breath and started chanting again. The rhythmic melody rose in pitch. His attention focused on the marionettes. The wood twitched at his feet.
“There you go again. Just because you chant doesn’t mean…”
The puppets rose to their feet, their strings dangling around them.
Gabe turned and pointed at the boy, his gaze hard and hate filled.
Luis’ scream ended in a horrible gurgle.
Gabe’s lips curled into a sneer. He’d been told dolls were for girls. What did they know?
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: He’d been told dolls were for girls
“Playing with dolls again?” Luis chortled.
Gabe turned away, squaring his shoulders. He took a deep breath and started chanting again. The rhythmic melody rose in pitch. His attention focused on the marionettes. The wood twitched at his feet.
“There you go again. Just because you chant doesn’t mean…”
The puppets rose to their feet, their strings dangling around them.
Gabe turned and pointed at the boy, his gaze hard and hate filled.
Luis’ scream ended in a horrible gurgle.
Gabe’s lips curled into a sneer. He’d been told dolls were for girls. What did they know?
Thursday, January 25, 2018
Flash Fiction - Find it...
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: You must find it before the others do
Daisha crept through the darkness. Shadows loomed before her as the chanting outside the hut grew louder.
“My child, you came.” The drums echoed through the stillness, nearly drowning out the wheezy voice. “Come closer, child. I must tell you…”
Daisha knelt next to the bed and took the old woman’s claw-like hand in her own. “Gran, save your strength. You’ll get better. You must.”
The straw rustled as she shook her head. “Nay. The future lies with you, child. You must find it before the others do…”
“Find what, Gran?”
The rattling breaths tore through her chest.
“Gran?”
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: You must find it before the others do
Daisha crept through the darkness. Shadows loomed before her as the chanting outside the hut grew louder.
“My child, you came.” The drums echoed through the stillness, nearly drowning out the wheezy voice. “Come closer, child. I must tell you…”
Daisha knelt next to the bed and took the old woman’s claw-like hand in her own. “Gran, save your strength. You’ll get better. You must.”
The straw rustled as she shook her head. “Nay. The future lies with you, child. You must find it before the others do…”
“Find what, Gran?”
The rattling breaths tore through her chest.
“Gran?”
Wednesday, January 17, 2018
Flash Fiction - The Stranger
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: A stranger was knocking on the door
Lightning flashed just beyond the blinds, lighting up the room. Ashley jumped in Tanner’s arms. His chuckle rumbled through his chest.
“It’s okay, baby. It’s just a storm.”
She sniffed slightly. “I read in the paper that some murderer escaped from prison today. Do you think he made it this far?”
He squeezed her shoulders. “Nah. The prison is miles from here. There’s no way.”
She sank against him and sighed.
Tapping against the glass caught their attention. A stranger was knocking on the door, his orange jumpsuit clearly visible in the porch light.
Ashley’s scream echoed through the night.
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: A stranger was knocking on the door
Lightning flashed just beyond the blinds, lighting up the room. Ashley jumped in Tanner’s arms. His chuckle rumbled through his chest.
“It’s okay, baby. It’s just a storm.”
She sniffed slightly. “I read in the paper that some murderer escaped from prison today. Do you think he made it this far?”
He squeezed her shoulders. “Nah. The prison is miles from here. There’s no way.”
She sank against him and sighed.
Tapping against the glass caught their attention. A stranger was knocking on the door, his orange jumpsuit clearly visible in the porch light.
Ashley’s scream echoed through the night.
Wednesday, January 10, 2018
Flash Fiction - A dress?
Flash Fiction: A piece of fiction that is extremely brief, usually less than a few hundred words
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: Give me one good reason why I should wear a dress
Xander stood, slamming his beer down on the table. The liquid sloshed over the sides, spilling onto the scarred table. “I won’t do it!”
“Look, Xander. This is the only way.” The man across from him held up his hands as if surrendering.
Xander glared, his nostrils flaring. He shook his head slowly. “You’ll never convince me.”
The man shrugged and leaned back in his chair. “Your call, I guess.”
Xander stopped for a moment, his eyes narrowing. “Give me one good reason why I should wear a dress.”
“Susan.”
Xander closed his eyes, his head bowed. He swallowed. “When?”
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: Give me one good reason why I should wear a dress
Xander stood, slamming his beer down on the table. The liquid sloshed over the sides, spilling onto the scarred table. “I won’t do it!”
“Look, Xander. This is the only way.” The man across from him held up his hands as if surrendering.
Xander glared, his nostrils flaring. He shook his head slowly. “You’ll never convince me.”
The man shrugged and leaned back in his chair. “Your call, I guess.”
Xander stopped for a moment, his eyes narrowing. “Give me one good reason why I should wear a dress.”
“Susan.”
Xander closed his eyes, his head bowed. He swallowed. “When?”
Wednesday, November 1, 2017
Flash Fiction - New Level of Lazy
Flash Fiction: A piece of fiction that is extremely brief, typically only a few hundred words or fewer
The Challenge: Write a piece in 100 words or less using the prompt...
The Prompt: This was taking "not giving a shit" to a new level
Disclaimer: My word processor broke so my word count is WAY off for this one... OOPS!
Nick leaned on the shovel, surveying his crew. "One, two, three..." He grimaced and counted again. "Where's Luke?"
The orange clad men stretched the wire to mend the fences. Hammers clanged in the morning air.
He turned, his heart sinking into his stomach as he surveyed the roiling water a hundred feet below. As crew foreman, he was responsible for the safety of his men. Nick reached for his radio, ready to call for help when he noticed an orange flag making it's way through the sagebrush. The little RC truck broke into the clearing carrying a small bucket of fencing nails. Nick's jaw dropped open and his gaze looked up at the truck. Luke sat in the shade, a beer in one hand and the RC remote in the other. This was taking "not giving a shit" to a new level.
The Challenge: Write a piece in 100 words or less using the prompt...
The Prompt: This was taking "not giving a shit" to a new level
Disclaimer: My word processor broke so my word count is WAY off for this one... OOPS!
Nick leaned on the shovel, surveying his crew. "One, two, three..." He grimaced and counted again. "Where's Luke?"
The orange clad men stretched the wire to mend the fences. Hammers clanged in the morning air.
He turned, his heart sinking into his stomach as he surveyed the roiling water a hundred feet below. As crew foreman, he was responsible for the safety of his men. Nick reached for his radio, ready to call for help when he noticed an orange flag making it's way through the sagebrush. The little RC truck broke into the clearing carrying a small bucket of fencing nails. Nick's jaw dropped open and his gaze looked up at the truck. Luke sat in the shade, a beer in one hand and the RC remote in the other. This was taking "not giving a shit" to a new level.
Wednesday, October 25, 2017
Flash Fiction - Investigation
Flash Fiction: A piece of fiction that is extremely brief, typically only a few hundred words or fewer
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: All that was left was a recording of them arguing. On loop.
The Challenge: Write a piece in 100 words or less using the prompt…
The Prompt: All that was left was a recording of them arguing. On loop.
The car door slammed. Darla looked over her shoulder and groaned as the chief spoke. "What do we have?"
She sighed. "Not much, Chief. Everything is toast except this drive." She twirled the charred thumb drive between her fingers.
"What's on it?" His eyebrows lifted in expectation, or was it apprehension?
She snorted and rose to her feet. "All that was left was a recording of them arguing. On loop."
"Arguing? About what?"
She grinned. "Planting bombs. Plenty of unsolved mysteries resolved in one tiny thumb drive."
His jaw dropped. "Are you sure?"
"Absolutely. You look a bit worried, Chief.."
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