Help baby nickey get double lung transplant

INTRODUCTION

LET US INTRODUCE YOU TO OUR BABY BOY NICKEY JRN.

OUR BABY BOY WAS BORN IN THE COOMBE HOSPITAL ON THE 03-05-23 WEIGHING IN AT 985 GRAMS.

JOURNEY IN COOMBE HOSPITAL

NICKEY WAS BORN AT 27 WEEKS BY EMERGENCY C SECTION DUE TO REDUCED END DIASTOLIC FLOW.HE WAS PUT ON CPAP AT 2 MINUTES OF LIFE. OUR BABY BOY WAS INTUBATED FOR THE FIRST SIX DAYS OF HIS LIFE DUE TO Pulmonary HYPERTENSION.ON THE SECOND DAY OF HIS LIFE AN ECHO WAS CARRIED OUT AND THE RESULTS SHOWED SEVERE PULMONARY HYPERTENSION WITH BIDIRECTIONAL FLOW ACROSS HIS PDA ALSO IT SHOWED A 4MM ASD WITH LEFT TO RIGHT FLOW.NICKEY JRN WAS SUPPORTED WITH TPN FOR THE FIRST EIGHT DAYS OF LIFE AND THAN PUT ON TO NG FEEDS .OUR SON EXTUBATED TO CPAP ON DAY 7 OF HIS LIFE BUT Unfortunately HE CAME INTO CONTACT WITH COVID 19 WHERE HE SPENT 3 WEEK IN ISOLATION ON HIGH FLOW OXYGEN WHERE WE WERE VERY LUCKY AS WE COULD HAVE LOSSED HIM DUE TO HIS PULMONARY HYPERTENSION.BEFORE HE WAS DISCHARGED TO CRUMLIN HOSPITAL HE WAS DIAGNOSED WITH HYPOTHYROISM WHERE HE BE ON LONG TERM MEDICATION FOR IT .GENITIC TESTING WAS CARRIED OUT ON NICKEY JRN AND HE CAME BACK POSITIVE FOR T21 (DOWNSYNDROME).

JOURNEY IN CRUMLIN HOSPITAL

NICKEY JRN WAS ADMITTED TO CRUMLIN HOSPITAL ON THE 25-07-23.OUR BABY BOY WAS SUPPORTED WITH 0.25 OF OXYGEN AT THIS TIME.AND WAS TO RECEIVE REPAIR TO HIS CLEFT LIP AND PALATE AND WAS ON A HABERMAN BOTTLE FOR PARTIAL FEEDING .HE WAS TO GET A RATE OF UP TOO 10 ML BUT UNFORNATLEY HAD RECEIVED MORE AND ENDED UP IN TO RESULTING IN GETTING ASPRIATION PNEUMONIA WHICH SET HIM BACK ONTO HIGH FLOW OXYGEN WHICH WAS A HARSE TIME FOR HIM AS WE COULD HAVE LOST OUR BABY BOY THIS WAS A MAJOR STEP BACK FOR OUR BABY BOY . REGULAR SLEEP STUDIES WERE CARRIED OUT AND RESULTED IN OUR BOY BEING DIAGNOSED WITH HYPOVENTILATION AND SLEEP APNOEA.NICKEY JRN WAS WEANED OF HIGH FLOW OXYGEN TO LOW FLOW AND NOW ON NASAL CANNULAE FOR LONG TERM OXYGEN THERAPY DUE TO HIM GETTING ASPRIATION PNEUMONIA.NICKEY JRN HAD REGULAR ECHOS CARRIED OUT AND SHOWED LEFT LOWER UPPER AND LEFT LOWER PULMONARY VEIN STENOSIS. HE HAD UNDER GONE A ANGIOGRAM AND BALOON ANGIOPLASTY WHICH IS NOT WORKING .NUMBEROUS JCC MEETINGS TOOK PLACE FOR NICKEY AND PALLITIVE CARE WAS SUGESTED .BUT AS PARENTS WE HAVE RESEACHED OUR BABY BOY CONDITION AND HAVE COME ACROSS TWO HOSPITALS OUTSIDE OF IRELAND THAT BE WILLING TO CATER FOR OUR SON AND GET HIM ON A LUNG TRANSPLANT LIST AND ADD YEARS TO OUR BABY LIFE .BEFORE DISCHARGE NICKEY JRN WAS DIAGNOSED WITH METOPIC SYNOSTOSIS WHICH IS LIFE THREATING.NICKEY JRN ALSO UNDER WENT SURGERY TO GET A PEG FITTED FOR HIS FEEDING NEEDS.

SO AS WE FINALY HAVE OUR SON HOME WITH US AFTER A LONG 8 MONTHS OUR BABY BOY HAS A LONG FIGHING ROAD AHEAD .WE ARE LINKED IN WITH THE FOLLOWING

1.PHYSIOTHERAPY

2.OCCUPATIONAL THERAPY

3.SPEECH AND LANDUAGE

4.CDNT

5.CARDIOLOGY

6.ENDOCRINOLOGY

7.RESPIRATORY

8.NEONATOLOGY

9.OPHTHALMOLOGY

10.TEMPLE STREET HOSPITAL

11.PLASTICS OPD

12AUDIOLOGY

HOW FUNDS WILL BE USED

SO OUR WEE BOY IS A BUSY LITTLE MAN AND KEEPS US ON OUR TOES WE HAVE PUT THIS PAGE UP FOR THE MAIN REASON TO HELP US RAISE FOR THE FOLLOWING.

1. TRITON ZERO CHAIR

(THIS CHAIR WILL ALLOW OUR CHILD TO INTERACT WITH HIS SIBLINGS AND SIT UP FOR FEEDING ALSO SUPPORT WITH HIS DEVELOPMENT AND MUSCLE TONE

2.DOUBLE LUNG TRANSPANT

(THIS IS THE MAIN ONE THAT WILL GIVE OUR BABY A FIGHTING CHANCE IN LIFE A NEW START FOR OUR WEE BOY WHAT HE DESERVES WHICH WILL TAKE PLACE OUT OF IRELAND WHEN FUNDING IS GATHER

3.MEDICAL ADAPTED /SENSORY ROOM

(THIS IS TO EQUIP A STERILE MEDICAL ROOM WITHIN OUR HOME FOR BABY NICKEY FOR ALL HIS MEDICAL EQUIPMENT INCLUDING HIS OXYGEN AND ALL OF HIS MEDICAL SUPPLIES.

THESE ARE THE MAIN THREE THINGS WE ARE ASKING FOR HELP WITH FUNDING FOR OUR LITTLE WARRIOR.

SO PLEASE FIND IT IN YOUR HEARTS AND HELP OUR LITTLE WARRIOR AS HE IS A REAL LITTLE FIGHTER

THANKS IN ADVANCE

DAD ,MUM,NICKEY JRN