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JAYZAIAH BOY'S
STORY
FAMILY AND FRIENDS,
WE KNOW THAT A LOT OF YOU ARE WONDERING ABOUT HOW JAYZAIAHS DOING! IT’S A WONDERFUL FEELING TO KNOW THAT JAYZAIAH’S STORY HAS TOUCHED MANY OF YOU! WE GREATLY APPRECIATE ALL OF YOUR CONCERNS AND THE CONSTANT FLOW OF PRAYERS WITH MANY GOOD INTENTIONS SENT OUR WAY! SO HERE’S JAYZAIAHS STORY FROM THE VERY BEGINNING TIL NOW!
ON MARCH 23RD 2016 WE WERE BLESSED WITH OUR LOVELY SON JAYZAIAH CASUGA! WEIGHING @ 7 ½ LBS AND 20 ½ INCHES IN LENGTH! IT WAS THE MOST BLESSFUL TIME WELCOMING OUR SON. PRETTY MUCH EVERYONE KNOWS WHAT ITS LIKE. IT WAS NO DIFFERENT THAN HAVING YOUR FIRST ONE. IT WAS JUST AS JOYFUL AND EXCITING FOR THE BOTH OF US AND HIS SISTER! WE WENT HOME AFTER TWO DAYS OF STAYING IN THE HILO MEDICAL CENTER LOCATED IN HILO ON THE BIG ISLAND OF HAWAII. WHERE I HAD C-SECTION GIVING BIRTH, TO AT THAT TIME A HEATHLY BABY “JAYZAIAH BOY”!
IT WASN’T UNTIL A MONTH LATER WE FOUND OUR WHOLE WORLD CHANGE RIGHT BEFORE US! ON THE EXACT DAY JAYZAIAH HAD MADE A MONTH OLD! EARLY MORNING I WAS AWAKENED BY OUR DAUGHTER JAYLISE. WHO HAD AWOKEN CRYING AND COULDN’T TELL ME WHY! BECAUSE SHE DIDDN’T KNOW WHY! I COULDN’T GET HER TO STOP CRYING AND SO AS I TRIED TO COMFORT HER AS SHE FELL BACK ASLEEP STILL CRYING! AFTER I HAD GOTTEN HER SETTLED. I THEN TURNED TO JAYZAIAH AND FIGURED I’D WAKE HIM UP BECAUSE I JUST REALIZED THAT HE HAD NOT AWAKEN TO EAT OR CHANGE HIS DIAPER! IT WASN’T TIL I HAD LIFTED OUR SON UP HE BEGAN TO MAKE A GRUNTING NOISE AS IF HE WAS HAVING A HARD TIME BREATHING! WE IMMEDIATLEY WENT TO OUR LOCAL HOSPITAL.
REACHING KAU HOSPITAL EMERGENCY ROOM JAYZAIAH WAS SEEN AND GIVEN ABRUTEROL TO HELP OPEN UP HIS AIR WAYS OF THE LUNGS. WE WERE TOLD THAT HE MAY BE STARTING TO HAVE RESPIRATORY PROBLEMS. THEN WE WERE ADVISED TO DRIVE STRAIGHT TO HILO MEDICAL CENTER. WHERE THE EMERGENCY ROOM WOUILD BE EXPECTING US! WE IMMEDIATELY STARTED OUR 1 HOUR DRIVE TO HILO.
ARRIVING AT HILO MEDICAL CENTER. THE VERY SAME HOSPITAL THAT I HAD GIVEN BIRTH. WE CHECKED IN AT THE EMERGENCY ROOM AND WAS TOLD TO WAIT AND THEY WILL CALL US WHEN THEY WERE READY. WHILE WE WERE IN THE EMERGENCY WAITING ROOM JAYZAIAH SEEM TO BE HAVING MORE OF A DIFFICULT TIME BREATHING IT WAS BECOMING FAINT AND SLOWER! BY THE TIME WE WERE ACTUALLY IN THE ROOM WAITING TO BE SEEN BY SOMEONE JAYZAIAH WAS LIKE GASPING FOR AIR. IT WAS THEN THAT HIS DADDY HAD RAN OUT ASKING FOR ASSISTANCE AND THEN WAS TOLD THAT SOMEONE WILL BE RIGHT THERE. BY THE TIME DADDY CAME BACK I HAD JAYZAIAH LOOKING AT ME. THEN HIS EYES SUDDENLY ROLLED BACKWARDS IN MY ARMS GASPING AND TURNING BLUE. I WENT RUNNING OUT OF THE ROOM SCREAMING TO THE TOP OF MY LUNGS AND JUST CALAPSED SCREAMING FOR HELP WITH MY LIFELESS BABY DANGLING IN MY ARMS NOT BREATHING AT ALL! IT WAS AN UNCONTROLABLE FEELING AND THE MOST TORTURING FEELING THAT NO PARENT SHOULD EVER EXPERIENCE! FEELING SO HELPLESS AND UNABLE TO CONSOLE AND HELP YOUR CHILD LIKE A PARENT SHOULD BE ABLE TO DO WAS THE WORST EVER. SOMEONE CAME RUNNING AND GRAB BABY JAYZAIAH OUT OF MY ARMS AND RAN OFF WITH HIM. THEY IMMEDIATELY DID CPR ON JAYZAIAH WITH A CROWD OF NURSES AND DOCTORS FLOODING THE ROOM! IT WAS THE MOST INTENSE FEELING EMOTIONALLY AND TH MOST TORTURING 2 MINUTES! TO WHERE WE WERE STRIPPED OF OUR WHOLE SELF HELPLESSLY SCREAMING FOR OUR FATHER GOD TO PLEASE HELP US! I CAN RECALL FALLING DOWN TO MY KNEES WITH DADDY TRYING TO CONSOLE ME IN HIS ARMS, SCREAMING TO GOD OUT LOUD FROM DEEP INSIDE. TO NOT TAKE OUR BABY, I WANT MY BABY, NOT NOW PLEASE AND JUST REPEATING IT OVER AND OVER AGAIN. WE BELIEVE GOD HAS HEARD US! AFTER THAT 2 MINUTES THAT HAD FELT LIKE FOREVER. GODS MIRACLE WE HEARD OUR SON GASPING AND SCREAMING AND CRYING. THAT VERY MOMENT WAS LIKE HEARING OUR SON CRYING FOR THE FIRST TIME AGAIN! LIKE WHEN WE FIRST MET HIM THE DAY HE WAS BORN. SEEING OUR SON AGAIN AND LOOKING INTO HIS EYES WAS LIKE A MESSAGE SENT FROM HEAVEN. AND YES IT WAS BECAUSE GOD HAD ANSWERED OUR PRAYERS. LIFE HAD CHANGED US BOTH. HOW ONE SECOND THE ONE YOU LOVE CAN BE TAKEN AND THEN GIVEN BACK. TO FEEL THE LOSS FOR A MOMENT AND FEEL THE LOVE FROM GOD THE NEXT! WHEN HE HAD GIVEN LITTLE JAYZAIAH BACK TO US! IN TWO MINUTES WE WENT FROM FEELING LIKE OUR HEART WAS BEING RIPPED OUT OF OUR CHEST TO FEELING SO GREATFUL OF THE BLESSING THAT HAD TAKEN PLACE BEFORE US! OUR SON, OUR MIRACLE BABY, OUR JAYZAIAH BOY!
AS SOON AS THEY WERE ABLE TO GET JAYZAIAHS HEART BACK BEATING AGAIN! WE WERE TOLD THAT KAPIOLANI WOMEN AND CHILDRENS HOSPITAL WILL BE ON THEIR WAY AS SOON AS THEY CAN GET A MEDAVAK TEAM TOGETHER! WE WERE TOLD THAT JAYZAIAH NEEDED MORE SUPPORT AND THAT THEY WILL BE HERE WITHIN THE NEXT FIVE HOURS! WHILE WE WAITED FOR KAPIOLANI’S MEDAVAK TEAM TO ARRIVE! JAYZAIAH WAS RECEIVING OXYGEN MANUALLY WITH THE MANUAL PUMP UNTIL KAPIOLANI COULD ARRIVE WITH THE OYGEN MACHINE! THEN AGAIN THAT WAS THE MOST LONGEST 5 HOURS!
AS SOON AS KAPIOLANI CAME THEY IMMEDIATELY PUT OUR SON ON OXYGEN SUPPORT AND PLACED IN A INCUBABTOR! WE THEN DECIDED THAT MOMMY WOULD GO WITH BABY SINCE ONLY ONE OF US WAS ALLOWED TO FLY OUT WITH HIM! DADDY TOOK THE NEXT FLIGHT OUT AND MET US THERE!
ARRIVING AT KAPIOLANI WOMENS AND CHILDRENS HOSPITAL THEY HAD TO IMMEDIATEY BUT OUR SON ON THE BREATHING TUBE TO GIVE OUR SON THE SUPPORT HE NEEDED ALONG WITH PIC AND IV LINES! THERE WE WERE TOLD THAT OUR SON WAS VERY SICK AND THAT HE WAS SICK BECAUSE HIS HEART WAS VERY SICK! JAYZAIAH HAD SUFFERED FROM A HEART ATTACK THAT THEY COULDN’T FIND REASON AS TO WHY IT HAD TAKEN PLACE! AFTER TWO DAYS JAYZAIAH HAD BECAME SWOLLEN AND WAS NOT IMPROVING AND JUST GETTING WORSE! AT KAPIOLANI THEY HAD RECOMMENDED US TO FLY OUT TO SEATTLE CHILDRENS HOSPITAL WHERE THEY SPECIALIZED IN CARDIAC BABIES! AS SOON AS WE AGREED TO GO THEY IIMMEDIATELY ARRANGED A MEDAVAK TEAM TOGETHER THE VERY NEXT DAY.
WE WERE ON A 51/2 HOUR FLIGHT ACROSS THE PACIFIC HEADED TO SEATTLE WASHINGTON. THEN AGAIN THAT WAS THE LONGEST AND MOST TERRIFING FEELING! FLYING IN MED AIR WITH OUR SON ON FULL SUPPORT OF OXYGEN AND IN CRITICAL HEALTH CONDITION IT WAS A SCARY FEELING! THE FEELING OF NOT KNOWING AND FORCED TO TAKE THINGS AS THEY CAME WAS HARD! ABOUT HALF WAY TO SEATTLE OUR SONS OXYGEN TANK THAT WAS SUPPOSE TO HAVE LASTED US THE TRIP TO SEATTLE IT HAD GONE EMPTY AND THERE WAS NO EXTRA TANK! THEY HAD TO EMERGENCY PULL THE EMERGENCY OXYGEN MASK OUT OF THE PLANE AND CONNECT IT TO OUR SON SO THAT OUR SON COULD CONTINUE TO GET THE SUPPORT HE NEEDED FOR THE REST OF THE WAY TO SEATTLE! ALTHOUGH THAT WAS A VERY INTENSE MOMENT GOD WAS STILL WITH US AND HAD THEN YET DID US ANOTHER MIRACLE!
FINALLY ARRIVING AT SEATTLE CHILDRENS HOSPITAL IT WAS HARD TO SEE OUR SON IN THE CONDITION THAT HE WAS! THEY RAN MANY TEST ON JAYZAIAH THAT HAD LED THEM TO BELIEVE THAT OUR SON HAD SUFFERED FROM A RARE DISEASE. A VERY RARE DISEASE THAT THE DOCTORS THEMSELVES HAS NOT DEALT WITH BEFORE. THE DISEASE THAT THEY BELIEVED JAYZAIAH SUFFERED FROM IS WHAT THEY BELIEVE HAD CAUSED JAYZAIAH TO HAVE SUFFERED FROM A HEART ATTACK! THIS DISEASE THEY COULD NOT FOR SURE SAY WITH CONFIDENCE THAT IT WAS EXACTLY WHAT JAYZAIAH IS SUFFERING FROM BECAUSE IT WOULD BE PROVEN THROUGH GENETIC LABS. THEY WANTED US BASED UPON THE FACTS THAT THEY GATHERED THAT LED THEM TO BELIEVE THAT THIS IS INDEED THE DISEASE. TO MAKE A SUDDEN DECISION ON WHATS BEST ON BEHALF OF OUR SON!
SEATTLE CHILDRENS HOSPITAL REACHED OUT TO OTHERS FOR OPINIONS AND TO SEE IF THERE WAS ANYONE WHO COULD HELP AND COULD HAVE DEALT WITH THIS RARE DISEASE BEFORE! THEY ENDED UP WITH A RESPONSE FROM SOMEONE OUT IN WASHINGTON DC. AN EXPERT THAT HAD BEEN STUDYING CASES THAT HAD APPEARED. IT WAS SUGGESTED THAT WE START OUR SON ON A BIOPHOSINATE THERAPY MEDICINE. THAT HAS SHOWN IN PAST CASES IT HAD SEEMED TO HELP STOP THE PROGRESSION OF THE DISEASE! THIS DISEASE IS SO RARE THAT THERE WERENT MUCH SURVIVING CASES AND NOT MUCH CASES TO SAY THAT CERTAIN MEDICINES ACTUALLY WORK! SO IT WAS ONE OF THE SUGGESTIONS MADE TO TRY THIS MEDICINE NOT KNOWING WHAT IT MAY DO FOR OUR SON BECAUSE THEY HAVE NOT USED IT BEFORE AND NOT ON THIS CERTAIN DISEASE! THEY ALSO SUGGESTED THAT WE START THIS MEDICINE AS SOON AS POSSIBLE. EVEN WITHOUT THE CONFIRMATION FROM GENETIC LABS THAT THIS IS ACTUALLY THE DISEASE. THE GENETICS LABS RESULTS TAKE UP TO A MONTH OR MORE AND JAYZAIAH DIDDNT HAVE THAT LONG TO WAIT! OUR SON WAS VERY SICK AND THE OTHER OPTIONS THAT WERE LAYED OUT ON THE TABLE WAS NOT AN OPTION FOR BOTH MOMMY AND DADDY! WE DECIDED TO NOT GIVE UP. OUR SON HAD MADE IT THIS FAR AND WENT THROUGH SO MANY STRUGGLES DOING SO. WE BOTH DECIDED THAT WE WILL NOT GIVE UP ON OUR SON AND CONTINUE TO FIGHT THIS AND ANY OTHER OBSTICLE THAT MAY ARISE WITH THIS, AND STICK IT OUT AND FIGHT ALONG SIDE OUR SON. IT WAS THE HARDEST TIME TO SIT THERE AND HEAR THINGS THAT YOU KNOW DEEP DOWN INSIDE WAS NOT AN OPTION! WE LOVE OUR SON AND WE BELIEVE GOD GAVE US BACK OUR SON FOR A REASON! OUR SONS A FIGHTER AND WE WILL GO THROUGH THE STRUGGLE WITH HIM! EVEN WHEN TIMES MAY SEEM AT ITS WORST!
SO AGGREEING TO STARTING THIS THERAPY MEDICINCE WITH OUR SON. IT WAS NOT STARTED RIGHT AWAY. EVEN AS URGENT AS HE NEEDED IT WE HAD TO WAIT FOR IT TO BE OREDERED AND DELIVERED. DUE TO IT NOT BEING USED IT HAD TO BE ORDERED TO GET IT HERE FOR JAYZAIAH TO START USING IT. AS SOON AS IT ARRIVED WHICH WAS DAYS LATER WE IMMEDIATELY STARTED THE THERAPY MEDICINE.
AT THIS TIME OUR SON WAS SO SWOLLEN DUE TO TOO MUCH FLUIDS IN HIS BODY. HE WAS VERY DIHYDRATED THEY HAD TO GIVE HIM FLUIDS. WHICH HIS BODY NEEDED TO RELEASE. HE HAD LOW VITAMIN D LEVEL, HE NEEDED MANY BLOOD INFUSION DUE THE MANY BLOOD DRAWS FOR TESTING, BECAUSE HIS HEART IS SICK HE SUFFERS FROM PALMONARY HYPERTENSION IN THE LUNGS.HIS HEART IS SICK DUE TO THE DAMAGES DONE BY THE HEART ATTACK, AND THEN HAD COMPLICATIONS DUE TO HIS HEART FUNCTION WORSENING! ALL OF JAYZAIAHS HEALTH ISSUES WAS CAUSED BY THE DISEASE THAT HE HAS.
THIS DISEASE CAME BACK POSITIVE THROUGH THE GENETIC LABS. THAT WE WERE GLAD TO HAVE CHOSEN TO GO AHEAD AND START THE MEDICINE THAT WAS RECCOMMENDED BY THE EXPERT OF WASHINGTON DC. JAYZAIAH SUFFERS FROM A VERY RARE DISEASE THAT IS CALLED GACI (GENERALIZED ARTERIAL CALCIFICATION OF INFANCY). A DISEASE THAT IN SURVIVAL RATES AREN’T HIGH ESPECIALLY IN INFANTS! INFANTS THAT HAVE GACI DON’T USUALLY SURVIVE PAST INFANCY! AGAIN WE ARE VERY BLESSED! USING THIS MEDICINE, ITS KNOWN IN PREVIOUS CASES TO HAVE STOPPED THE PROGRESSION OF THE CALCUIM BUT NOT TAKE AWAY WHATS ALREADY BEEN DONE. OVER TIME THE CALCIUM THAT STILL EXIST IS KNOWN TO RID ITSELF OUT OF THE BODY OVER TIME. JAYZAIAH IS ONE OF THE NOT SO MANY SURVIVING CASES! WE HAVE BEEN HERE IN SEATTLE FOR 3 MONTHS NOW AND THAT JUST ABOUT AS LONG AS HE’S BEEN ON THE BISPHOSPHONATES THERAPY MEDICINE USING ENTIDRONATE.
Generalized arterial calcification of infancy (GACI) is a disorder affecting the circulatory system that becomes apparent before birth or within the first few months of life. It is characterized by abnormal accumulation of the mineral calcium (calcification) in the walls of the blood vessels that carry blood from the heart to the rest of the body (the arteries). This calcification often occurs along with thickening of the lining of the arterial walls (the intima). These changes lead to narrowing (stenosis) and stiffness of the arteries, which forces the heart to work harder to pump blood. As a result, heart failure may develop in affected individuals, with signs and symptoms including difficulty breathing, accumulation of fluid (edema) in the extremities, a bluish appearance of the skin or lips (cyanosis), severe high blood pressure (hypertension), and an enlarged heart (cardiomegaly).
WITH JAYZAIAH CURRENTLY FIGHTING OFF THIS DISEASE AND TRYING TO STABALISE HIS HEART AND LUNGS. THEY MAY BE CONSIDERING THAT HE MAY NEED A HEART TRANSPLANT. BUT WE ARE CURRENTLY ON HEART MEDS AND TRYING TO GIVE HIM TIME FOR THE HEART TO HEAL AND GIVING THAT AS HE GROWS THINGS WILL IMPOVE TO WHERE WE MAY NOT HAVE TO CONSIDER A HEART TRANSPLANT. WHICH WE ARE PUTTING OUR INTENTIONS OF JAYZAIAH NOT HAVING TO HAVE ONE, AND THAT HIS HEART CAN RECOVER AND HEAL THROUGH THE MANY HEART MEDICINES THAT HE IS CURRENTLY ON. AS FOR THE HEART FAILURE TEAM, AS OF NOW HE ISNT CONSIDERED WELL ENOUGH DUE TO THIS GACI DISEASE TO BE A CANIDATE TO BE ON THE LIST TO RECEIVE A HEART. HE WILL BE CONSIDERED AS A CANIDATE WHEN THE DISEASE IS NO LONGER A CONCERN! THAT OF WHICH JAYZAIAH IS CURRENTLY STILL BEING TREATED FOR WITH THE THERAPY MEDICINE WHICH IS A MEDICINE THAT DON’T WORK WITH FAST RESULTS IT WILL TAKE TIME,MONTHS TO SEE ANY POSITIVE RESULTS! BY PREVIOUS CASES IT IS SAID TO SEE SOME REAL RESULTS AROUND THE 6 MONTHS OF AGE. TODAY JAYZAIAH IS 4 MONTHS OLD AND HAS BEEN TAKING THE THEREAPY MEDICINE FOR ABOUT THREE MONTHS NOW! THOUGH WE MAY HAVE A LONG ROAD AHEAD OF US JAYZAIAH HAS BEEN MAKING IMPROVMENTS AND WE ARE LOOKING FORWARD TO CONTINUE ON THE POSITIVE PATH! EVEN THOUGH AT TIMES IT MAY HAVE SEEM AT ITS WORST! WE PULL THROUGH EVERYTIME! GOD HAS PLANS FOR OUR SON AND WE ARE HERE TO HELP HIM FULFIL HIS DESTINY. WE WILL STAND STRONG WITH HIM AND WITH OUR FATHER GOD AND HIS ARMY OF ANGELS THAT HAVE BEEN WITH HIM FROM THE BEGINNING TIL NOW. THEY WILL CONTINUE TO CARRY JAYZAIAH BENEATH THEIR WINGS. OUR MIRACLE, OUR LOVE, OUR FIGHTER, OUR BLESSING, OUR SON, “JAYZAIAH BOY”!
THANK YOU EVERYONE FOR ALL YOUR LOVING THOUGHTS, CONSTANT FLOW OF PRAYERS AND POSITIVE SUPPORT! OUR JOURNEY HAS ONLY BEGUN AND SOON WE WILL ONE DAY BE BACK HOME! LOVE YOU ALL FAMILY AND FRIENDS!