OUR LITTLE WARRIOR FIGHTING TO SURVIVE

LET US INTRODUCE YOU TOO OUR SON NICKEY JRN.NICKEY WAS BORN AT 27 WEEKS PREMATURE IN THE COOMBE HOSPITAL ON THE 03-05-23 .WEIGHING ONLY A MERE 985G.SO LET US TELL YOU HIS STORY.

ON HIS 20 WEEK SCAN THEY FOUND THAT NICKEY JRN HAD A CLEFT LIP/PALATE AND WE WERE BOUGHT BACK THE FOLLOWING DAY TO MEET WITH A PROFESSOR FOR A MORE DETAIL SCAN AS THEY WANTED TO CHECK FOR THREE DIFFERENT SYNDROME'S BUT NOTHING SHOWED UP AT THIS TIME.NICKEY JRN WAS DELIVERED AT 27 WEEKS BY EMERGENCY C-SECTION DUE TO REDUCED END-DIASTOLIC FLOW.

AS SOON AS NICKEY JRN WAS BORN HE WAS ON C-PAP AT HIS FIRST 2 MINUTES OF LIFE.HE WAS INTUBATED FOR SEVERE PULMONARY HYPERTENSION REQUIRING INHALED NITRIC OXIDE.ALSO AN ECHO WAS CARRID OUT ON DAY 2 OF HIS LIFE WHICH SHOWED BIDIRECTIONAL FLOW ACROSS HIS PDA AND A ASD WITH LEFT TO RIGHT FLOW AND HIS DUCTUS ARTERIOSUS WAS CLOSED.NICKEY ALSO SUFFERED WITH A BLEED TO THE BRAIN FOR THE FIRST 15 DAYS OF HIS LIFE .NICKEY WAS SUPPORTED FROM BIRTH TO 8 DAYS ON O TPN HE ALSO WENT FOR GENETIC TESTING AND WAS DIAGNOSED WITH T21 (DOWN SYNDROME).

HOWEVER HE WAS EXTUBATED TO C-PAP ON DAY 6 OF LIFE AND WANT ONTO HIGH FLOW NASAL CANNULA AT 21 DAYS OLD WHERE NICKEY WAS COMFORTABLE STABLE UNTIL HE DETERIORATED DUE TO CONTACTING COVID-19 FROM A STAFF MEMBER WHERE HE ENDED UP IN ISOLATION FOR 5 WEEKS BACK ON C-PAP AND CAFFEINE CITRATE WHERE WE WERE LUCKY HE FAUGHT THIS AS HE WAS SO COMPLEXED AND PREMATURE .SHORTLY AFTER THIS NICKEY JRN WAS DIAGNOSED WITH HYPOTHYROISM JUST BEFORE HIS TRANSFER TO CRUMLIN HOSPITAL.

OUR LITTLE WARRIOR WAS TRANSFERED TO CRUMLIN ON THE 27-07-23.NICKEY JRN WAS ON 0.2 LTR OF OXYGEN.NICKEY JRN WAS TRANSFERED TO CRUMLIN FOR CARE OF HIS CLEFT LIP/PALATE .HE WAS NG FED AND BOTTLE FED OF 10ML BUT UNFORNATLEY NICKEY JUNIOR WAS OVERFED AND GOT ASPIRATION PNEUMONIA WHICH LED HIM TO BE BACK ON HIGH AND LOW FLOW OXYGEN WHERE HE SUFFERED WITH HYPOVENTILATION .NICKEY UNWENT A CARDIAC CATHETERIZATION ON THE 18-09-23.THIS IS WHERE AN ANGIOGRAM AND BALLOON ANGIOPLASTY OF HIS LEFT UPPER AND LEFT LOWER PULMONARY VEINS WAS CARRIED OUT .AN ECHO WAS AGAIN CARRIED OUT AND SHOW REACURRENCE OF STENOSIS.AT THIS POINT HIS DOCTORS HELD A JCC MEETING AND I QUOTE THERE CONCLUSION WAS THAT OUR WEE BOY WOULD NOT BENFIT FROM FURTHER INTERVENTION AND WAS REFERRED FOR PALATIVE CARE .AND TOLD BY ONE OF HIS CARDIOLOGIST PROFESSOR THAT OUR SON HAS 3 WEEKS TOO LIVE .WHERE WE ARGUED WITH THEM AS WE COULD SEE LIFE AND THE WILL TO LIVE IN OUR WEE BOY.AT THIS STAGE EVERY SURGERY IS PUT A STOP TO EVEN HIS POOR CLEFT LIP/PALATE WHICH IS LEADING HIM TO LOSE WEIGHT .WE HAVE CONVINCED CRUMLIN HOSPITAL TO DO PEG SURGERY ON NICKEY JRN BEFORE HE WAS DISCHARGE WHERE HE GET HIS 5 FEED OF MILK A DAY AND HIS 7 MEDICATIONS THREW EACH DAY.OUR LITTLE WARRIOR WAS DISCHARGE FROM CRUMLIN ON THE 08-01-24 FOR PALLATIVE CARE.

WE AS PARENTS HAVE OUR SONS BEST INTERESTS TO HEART AND WE CATER FOR HIM 24/7 AND WE CAN SEE PROGRESS IN HIM AND THE WILL TO LIVE SO WE HAVE DONE A SEVERE AOUNT OF RESEACH AND LOADS OF VIDEO CALLS WITH TWO HOSPITALS THAT WE ARE GUARANTEE THEY CAN HELP OUR SON BY EXPANDING HIS LIFE WITH MEDICATION ALSO A DOUBLE LUNG TRANSPLANT .NOW WE ATTEND ALL HIS FOLLOW UP MEETINGS IN CRUMLIN HOSPITAL AND HE GETS HIS LOCAL HOME PACKAGE AS WELL .

BUT THIS SO FRUSTRATING AT TIMES FOR BOTH US AND OUR SON TO SEE THAT HE WAS GIVEN UP ON WHEN SO MUCH MORE CAN BE DONE.

WE HAVE SET UP THIS GO FUND ME FOR OUR LITTLE WARRIOR TO RAISE FUNDS FOR THE ONGOING TRAVEL EXPENSES AND ACCOMDATION FOR WHEN HE TAKES ILL AND WE HAVE TO BE CLOSE TO HIM ALSO WE ARE ASKED TO TRAVEL TO A HOSPITAL IN AMERICA AND THE UK TO STAY WHILE THEY CARRY OUT TESTS AND REVIEW HIM SO THIS COMES AT AGREAT EXPENSE ALSO SO ANY HELP UPON THIS IS APPRECIATED

SO WE LIKE TO THANK YE ALL IN ADVANCE AND KEEP EVERYONE UPDATED ON REGULAR BASICS