Mateohs chronic granulomatous disorder journey
Donation protected
My son Mateoh is a happy 2 year old little boy who loves playing with his brother and sister loves preschool and loves being a typical boy.
For numerous weeks i had been taking Mateoh to the doctors to be only told it's the flu given antibiotics n told he would be fine..
On the 14th October I just had a feeling something more was wrong after weeks of high temperatures weight loss no appetite n dramatic change in behaviour I took him to the gold coast university hospital at 9am n by 10.30 they realised dramatically something was more wrong then just the flu.
My little man's bloods had come back he was in heart failure he needed a blood transfusion immediately n antibiotics.
Further scans have showed he has several lesions in his liver lung n kidney.
After 2 days of no answers awaiting results we were rushed to the Brisbane children's hospital on our arrival was awaiting the oncology team surgeons, infectious disease specialist and radiology and immunology team.
I didn't know what to expect.
It's been blood test after blood test with them being sent to America for DNA n genetic testing, it's been ultrasound ct scans MRI xrays with still so many questions there was no answer.
With so many test, scans and biopsy and the doctors corresponding with over seas doctors trying to confirm what's going on with taoh there were finally results that Mateoh has chronic granulomatous disorder.
A rare immune system disease were infection and bugs have taken over his right diaphragm eating away at his liver lung n kidney causing many complications.
As a result of the infection Mateoh has had surgery to remove half his liver with the help from over seas surgeons and surgeons from the Princess Alexander hospital.
Surgery went longer then expected and resulted in more infection being found.
Currently Mateoh has been in brisbane children hospital for 2 n a half months trying to stabilise him enough so we can move closer to home for the holiday period.
A week before Christmas we were transferred to the GCUH were i have learnt to do all his medications and feeds through his nasogastric line
With fantastic news before Christmas we were told they had found a match for a bone marrow transplant.
We were finally aloud home.
With high temps still and infection levels keep going up we were only home for 2 days before being admitted back to hospital.
With higher steroids on board and the home nurse we made it home for Christmas day.
We are now back in hospital for a 2 week admission then up to brisbane with the hope taoh stays stable to be able to start chemotherapy n have a bone marrow transplant In the beginning of next year.
Mateoh is looking at a long n lengthy stay in hospital until he is in the clear from his bone marrow transplant.
With the financial cost of travelling back n forth between hospitals and home the cost of medications and raising a young family on my own and donation would go along way and be greatly appreciated even a share to spread around would mean alot.
For numerous weeks i had been taking Mateoh to the doctors to be only told it's the flu given antibiotics n told he would be fine..
On the 14th October I just had a feeling something more was wrong after weeks of high temperatures weight loss no appetite n dramatic change in behaviour I took him to the gold coast university hospital at 9am n by 10.30 they realised dramatically something was more wrong then just the flu.
My little man's bloods had come back he was in heart failure he needed a blood transfusion immediately n antibiotics.
Further scans have showed he has several lesions in his liver lung n kidney.
After 2 days of no answers awaiting results we were rushed to the Brisbane children's hospital on our arrival was awaiting the oncology team surgeons, infectious disease specialist and radiology and immunology team.
I didn't know what to expect.
It's been blood test after blood test with them being sent to America for DNA n genetic testing, it's been ultrasound ct scans MRI xrays with still so many questions there was no answer.
With so many test, scans and biopsy and the doctors corresponding with over seas doctors trying to confirm what's going on with taoh there were finally results that Mateoh has chronic granulomatous disorder.
A rare immune system disease were infection and bugs have taken over his right diaphragm eating away at his liver lung n kidney causing many complications.
As a result of the infection Mateoh has had surgery to remove half his liver with the help from over seas surgeons and surgeons from the Princess Alexander hospital.
Surgery went longer then expected and resulted in more infection being found.
Currently Mateoh has been in brisbane children hospital for 2 n a half months trying to stabilise him enough so we can move closer to home for the holiday period.
A week before Christmas we were transferred to the GCUH were i have learnt to do all his medications and feeds through his nasogastric line
With fantastic news before Christmas we were told they had found a match for a bone marrow transplant.
We were finally aloud home.
With high temps still and infection levels keep going up we were only home for 2 days before being admitted back to hospital.
With higher steroids on board and the home nurse we made it home for Christmas day.
We are now back in hospital for a 2 week admission then up to brisbane with the hope taoh stays stable to be able to start chemotherapy n have a bone marrow transplant In the beginning of next year.
Mateoh is looking at a long n lengthy stay in hospital until he is in the clear from his bone marrow transplant.
With the financial cost of travelling back n forth between hospitals and home the cost of medications and raising a young family on my own and donation would go along way and be greatly appreciated even a share to spread around would mean alot.
Organizer
Shal Meme Taoh Kaiyd
Organizer
Upper Coomera, QLD