Veronica & Kids Need Help To Fight
Organized by: Veronica Hall
March 25, 2016
My name is Veronica, I'm 36 and a single mother to 6 wonderfully awesome children (ages: 17, 15, 11, 9, 7 and 4).
I am in desperate need of help; to continue this battle, to keep enduring this medical nightmare.
Let's start with Kimberly and her medical issues:
Kimberly Joy is my youngest, she's 4. My spunky, determined, intelligent, beautiful best friend and daughter.
She has a condition called Severe Optic Nerve Hypoplasia, the nerves in her eye didn't fully develop and attach. Her right eye is affected the most: she's completely blind in her right eye and doesn't even have light perception in that orbit.
There is NO cure for ONH. She wears glasses to help not weaken the left eye (although I've noticed that eye's ability has recently diminished slightly, we will be going for more extensive testing) and most importantly the glasses are to PROTECT her ONE viable eye (any accident or object in that eye and she would be completely blind).
With ONH there are other complications and conditions that go with it: difficulty with producing hormones is one. Therefore she has to go see an Endocrinologist to monitor her hormones regularly. So far we have been very blessed, her testing has shown average to just little below normal so for now we don't have to do injections or replacement therapy.
ALL of her specialists are out of Arkansas Children's Hospital in Little Rock, AR; for the best of the best out here we have to drive 1.5 hours there.
A few months ago they did a sedated brain MRI and unfortunately they discovered at least 3 "possibly cystic masses" on her brain, one being on the very bottom of her pituitary gland. She now has a Neurosurgeon and they are stressing the urgency of brain surgery.
We are very blessed to be on Medicaid. She gets one pair of glasses a year. I'm currently saving up for an awesome pair of glasses for her: the ear pieces go up and all the way around the ears so that there is no need for the band around her head to keep the glasses from shifting and falling down. They cost close to $520.
I am also worried and concerned about when she does go get brain surgery. I know that for this type of surgery they will keep her for 7-10 days. Which I will be with her the WHOLE time, without question. When she gets discharged I am really debating on staying in a motel for an additional 2-3 days just in case there are ANY complications or problems. I'd rather it be me and her, SUPER CLOSE to the hospital that did her surgery rather than home with all 6 of the children and almost 2 hours from "her hospital" (trying to get someone to watch my youngest children even during the hospital stay will be a battle...I will explain that here in a few...so returning, getting all the kids and THEN a problem arises? Not sure HOW I could all sorted in a huge hurry AND GET TO the far away hospital...). I need to do what is best for KIMBERLY.
In regards to me and my health:
I underwent an emergency hysterectomy in 2013 that did MAJOR PERMANENT DAMAGE:
*bladder nerves and function severed
*bottom of spine, branch of nerves severed
*deep vein thrombosis/blood clot
*severe abdominal adhesions
*crushed and collapsed rectum
*continuous inflammation in intestines
In under 21 months I have underwent 7 surgeries. I still have a minimum of SIX more surgeries. None of this is "fixable", the surgeries from here on out are to attempt to improve my QUALITY of life.
I live in constant and continuous pain. I am nothing and nowhere like I WAS, and I never will be. I am limited now on so much, on what I can and cannot do.
I have continuous complications, frequently going to the doctor/ER and almost always get admitted for days on end. I've had staph/MRSA in my right kidney, weakening it tremendously, to where now a simple UTI (urinary tract infection) will so QUICKLY go into my bladder then kidney: spiking 103 fever, shaky, sick, weak, blacking out, etc. My intentions keep becoming inflamed and infected; recently I was admitted for 8 days for a bacterial infection raging in my intestines: E. Coli.
In October 2014 I was hospitalized for difficulties with my kidney and stoma/colostomy and upon getting MANY tests I was diagnosed with SMAS. Superior Mesenteric Artery Syndrome is " the rarest gastrointestinal disorder known to medical science with a 1 in 3 mortality rate." (According to Mayo Clinic) After your food is digested in your stomach it travels thru your duodrnuem, a bent tube going down to your intestines. In this bend is also the MAIN Artery to your whole body. With SMAS your duodenum is compromised, you have NO fat lad to keep the bend OPEN, it is CRUSHED...kind of like trying to suck thru a straw that is completely and absolutely bent...also crushing that main artery running thru it. Usually when people are diagnosed with SMAS their specialist will put them on a feeding tube for 6-12 months, try to get the patient to gain weight, gain a fat pad, open up the duodenuem passageway. Surgery is the VERY LAST RESORT.
In my case the whole thing was so compromised, only allowing DRIPS of liquid to pass thru in FOUR HOURS. Therefore I HAD to have surgery, it literally was "life or death". My surgery was a " duodenojenostomy" DJ surgery: making 3 holes in the bottom of my stomach and 3 holes in the top of my intestines and connecting those, bypassing the duodenuem, creating "a path of least resistance" supposedly; my stomach completely reconstructed. This surgery was the WORST out of all my surgeries: being cut all the way up my sternum. Recovery was extremely long and difficult, I was unable to stand fully straight and upright for over a month (plus the fact that I was away from my children, hospitalized, for 17 days). I was my stomach surgeon's first skinny patient (he does primarily, solely, gastric bypass surgery) and I was his first EVER SMAS patient. Before my surgery he consulted with over 20 other stomach surgeon's in regards to my case and what would be "best" surgery-wise. Him and ALL 22 other surgeons said the same, "I've heard of SMAS but I've only seen it in the textbooks in medical school. I've never had an actual patient with it." He did reassure me though, in recovery, "Your anatomy is PERFECT! Seriously when I opened you up it was JUST LIKE looking up 'SMAS' in medical school! EXACTLY like that picture and diagram, to a T!"
Unfortunately the surgery was NOT a success. My symptoms, pain and complications returned, seemingly tenfold, within 2 months. Out of a month I am lucky to keep down 8-9 days total of solid or mushy food. Otherwise I am on a completely LIQUID diet, and that still only has a 50-50 chance of staying down.
I live with constant nausea and abdominal pain. I eat and it is almost like I am allergic to food: I get sweaty, clammy, heart starts racing, feel feverish and oh so horribly SICK. A small bowl of mashed potatoes or pudding will swell up my abdomen, making it tight, taut and hard, uncomfortable, looking 7-8 months pregnant. (I was life-flighted last November, from 1.5 bowls of hamburger veggie soup! My abdomen was so distended it hurt horribly. It was pushing up on my diaphram, making it hard to breathe and the pain went thru me like a knife to my center back. Helicoptered and admitted for 8 days.)
My last hospital stay was this past February. I had no output with my colostomy for 9 days and I knew with my back pain sharp that my right kidney was messing up again. During my stay a LOT of tests were ran; CTs, MRIs, baruim testing, etc.
First it was discovered that I had pockets of inflammation and infection around my internal staples, the ones holding my sternum together (SHARP jabbing chest pains). It was so bad they were talking about sedating me and draining the infection...
Until they ran another CT, this time with contrast, and discovered I have "free standing fecal matter" in my abdominal cavity. Turns out I have an actual HOLE, a literal LEAK in my intestines, right about 6 inches in from my stoma, leaking feces (poop) into my guts. I thought they would operate, FIX IT...they kept me on TONS of IV antibiotics for 6 days and then sent me home with prescriptions for SIX antibiotics to take orally EVERYDAY (consulting with my main doctor a week later I found out that 3 of those antibiotics you CANNOT take together).
Leaking feces in your abdomen is TOXIC. I will eventually become septic if this is not corrected surgically. I am trying my hardest to keep fighting and enduring this battle, day in and day out.
I do it for MY CHILDREN. They are my MOTIVATION and INSPIRATION. For THEM I get up everyday and deal with my pain and limitations, I plaster a smile on my face, keep my chin lifted and KEEP GOING FORWARD. Honestly if it wasn't for them I would have long ago just curled into s ball and given up (probably right after my first "life or death" surgery done thru the ER when my intestines had fallen out and were left unnoticed for so long that I had air and infection all around my heart and lungs) but I keep going for THEM, they are my EVERYTHING and honestly for most of my children I am ALL THEY HAVE (my oldest son's father died in 2011, my younger 4 children do not have their fathers I'm their lives, due to the fathers' choice...we do have family, few and far between).
I am seriously a SINGLE MOTHER. They do have their Aunt a few miles down the road and their Mamaw 12 miles away. But they all have their own lives. They do watch my children from the day I get hospitalized to the day I get discharged (at times they may keep them a few days after discharge, but usually my children want to come home, they cry to be with their Momma. Our little family unit is strong, full of unconditional love and determined.)
Out of all my surgeries and enormous amount of hospitalizations I have driven MYSELF to almost each and EVERY ONE, the percentage is probably 98% of the time I'm SOLO. My specialists and surgeons KNOW this, telling the nurses, "Let her go, I KNOW. She seriously means what she says: she's a SINGLE MOM, there is NO ONE helping her but her kids."
I have recently removed us from an abusive relationship that was ongoing for years. He couldn't accept or deal with my medical problems. It was all based on control, intimidation, manipulation, continuously abandonment and neglect. To finally be released from walking on eggshells for years is a HUGE step, freeing. But while he has been gone from our house since 12.2013 he still was involved and affecting our lives greatly until recently. The continuous emotional abuse and control had to STOP, it had affected the children tremendously. His continuous abandoning and neglecting the children over and over, cutting contact for attempts of control, isolation...it was too much to keep doing on top of dealing with parenting, my medical, taking care of 6 kids and Kimberly's medical.
I NEED to get me and my children AWAY from here. We are living RURAL, 12 miles from 'town' and with severe medical problems this isn't smart. The house we are in, have been in for over 4 years, it needs MAJOR REPAIRS (plumbing, electrical, roofing, etc), we need SAFE and SECURE. My vehicle, our SOLE vehicle is in desperate need of brakes, oil change and repairs (oil leak and it sputters and stalls out). My bills are rolling over at times, it is becoming harder and harder to catch up (I fought for 2 years but in 11.2014 I finally got DISABILITY, thankfully, but as we all know that is an extremely LIMITED income) I owe HUD/Housing Authority an outstanding bill from quite a few years ago. Until that is PAID OFF I am NOT ELIGIBLE for ANY kind of housing assistance/income based.
I am asking for help. Honest and true help. ANYTHING at all, no matter how small, HELPS HUGE for me and my children. $5, if it can be spared, could be a MEAL for me and my daughter when we are staying in a motel after her surgery. $10 here and there: it ADDS UP. I have never 100% truly focused on asking for help like this, on a fundraising site (I had tried gofundme, back when I had my first 2 or 3 surgeries, but it never had any donations and my "significant other" at the time he shunned me from even trying, made me feel bad for even ASKING...but the truth is he doesn't even help with his two children here. I have, on many occasions, literally BEGGED him for $10 in gas to get Kim to her Endocrinologist or Eye Specialist and he REFUSES to help.)
Some recent events have made me TRULY REALIZE how DESPERATE things are: the urgency to get us OUT of this house, the dire NEED to get me medical care, ASAP, to fix my fecal leak, etc...and I decided to say a prayer and do THIS: put it public and hope and pray for some kind and caring individuals to open their hearts and possibly help us.
Thank you so much for taking the time to read this. I truly do appreciate it.