River-Kai Hanson Wheeler 4.5 years old
Taking photos with his "BEADS OF COURAGE".
Marineland, Florida AUGUST 2014
FUNDS WILL BE USED FOR: Hotels, gas, tolls, airfare, car rentals, etc.
When River-Kai was born I stepped back from working and STEPPED UP as a full - time caregiver of my medically needy son who endured life saving surgery at 9 weeks old from Intestinal Malrotation with Intermitent Volvulus. River-Kai ( now 4.5 yrs) lives with a chronic life threatening illness of Antral Hypomotility (neurologically nerves do not work in his stomach) & Intestinal Pseuo Obstruction-Ileus.
My illness is INVISIBLE but my HOPE shines through!
Antral Hypomotility: A.K.A. Gastroparesis The term gastroparesis is ambiguous because it implies a specific condition — paralysis of the stomach — without addressing causes or severity. The exact cause of gastroparesis is unknown. The stomach is not paralyzed. Instead, gastroparesis seems to be both a muscle and sensory problem (neuromuscular disorder). Factors that may contribute to gastrointestinal symptoms include: antral hypomotility, gastric dysrhythmia, impaired gastric fundic accommodation, antral distention & visceral hypersensitivity.
Bloated belly due to Ileus. Being fed via J port through his GJ tube.
Intestinal Pseuo Obstruction-Ileus: A.K.A. CIPO Ileum is the 3rd segment of the small intestines. Ileus occurs from hypomotility of the gastrointestinal tract in the absence of mechanical bowel obstruction. Although the exact pathogenesis of ileus remains multifactorial and complex, the clinical picture appears to be transiently impaired propulsion of intestinal contents. The complex interaction between autonomic and central nervous system function, as well as local and regional substances, may alter the intestinal equilibrium, resulting in disorganized electrical activity and paralysis of intestinal segments. This lack of coordinated propulsive action leads to the accumulation of gas and fluids within the bowel.
River-Kai has many complex GI issues that are symptoms of the above. since the age of 6 months old he has solely depended on being fully tube fed to survive. For the first 3 years he had a G - Tube (fed into the stomach). February 2013 he was switched from a G - Tube to a GJ-TUBE (bypasses the stomach and is fed into the end of the 2nd segment of his small intestines). The medical food is a pre digested amino acid based formula.
Maria Fareri Children's Hospital Westchester Medical Center Valhalla, NY. Playing mini golf with Uncle VJ.
In 2012 at Cincinnati Children's Hospital River-Kai had Antroduodenal Manometry & Colonic Manometry testing...A.K.A. motility (testing of the muscles & nerves in the GI tract...a 6 hour test that starts with surgically puttung tubes throughout his GI tract) studies done. It was that test that revealed...River-Kai's stomach didn't work or tolerate food. It was that test that GAVE ANSWERS. I solely took it upon myself to have him tested because most doctors were clueless why he had the issues he did & they couldn't help him. That answer wasn't good enough for ME! I have researched endlessly to educate myself to become the best advocate & care giver of River-Kai. I have also taken the mommy vow of poverty (lol) to ensure that River-Kai has nothing but the best care.
UF Health Shands Children's after meeting Dr. Islam.
As of July 31, 2014...River-Kai was seen by Dr. Islam/Surgeon at Shands Children's in Gainesville, FL. NY GI reffered him to consult about GES.
Gastric electrical stimulation (GES) uses a device implanted in the abdomen to send mild electrical pulses to the nerves and smooth muscle of the lower stomach. This helps decrease nausea and vomiting in some patients with gastroparesis. Gastroparesis affects the nerves and muscles of the stomach, delaying the emptying of food from the stomach into the small intestine. Several different conditions can cause it, including diabetes and nervous system disorders, although in many cases the cause isn't known. GES is used to treat patients with gastroparesis due to diabetes or unknown causes only, and only in patients whose symptoms can't be controlled by medication. GES does not cure gastroparesis but it helps controlled symptoms endured. One must still follow a medical plan to help them along with GES.
THE PLAN: To place a temporary GES for an extended trial of approximately 1 month with a G-Tube. If it works...A permanent one will be placed.
During the trial Dr.Islam will allow us to fly back to NY.
River-Kai starts Kindergarten this September. He just graduated from Pre-K in June. This summer he has been attending summer session Pre-K to receive speech therapy and coping skills therapy.
Our story is long, it is very complex but it is filled with LOVE, STRENGTH, COURAGE and most importantly a little boy that is full of life, he baffles most who meet him & has a smiles to melt any heart.
Various photos "A Journey of A Different Kind"
After GES (Gastric Electric Stimulation/Gastric Pacemaker Trial) on August 20, 2014 @ Shands Childrens Hospital/UF Health Gainesville, Florida.
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