Originally this website was created to raise funds for our little man Jason. What started out as a fund-raising website to appeal for help from the community to take our little boy to Austria to a specialized feeding clinic in order to wean him off his feeding tube has grown into so much more. This website has become Jason’s journey. Through the help and support of the many followers I have never stopped updating the website and blogging about Jason’s daily life.
Jason was a tube fed child. He had his feeding tube for 9 years. Jason was born on the 8th June 2007 at 31 weeks weighing 1kg at birth. He developed silent reflux not long after birth and was diagnosed with severe reflux in November 2007. As the reflux was silent and he wasn’t vomiting we had no idea that he was even refluxing. He was constantly getting pneumonia and repeated chest infections. At the time he was diagnosed he was 5 months old weighing 2.9 kgs. Our options were to try helping the reflux with medication and change of formula or to have an operation to fix the reflux called a Nissan Fundoplication. Due to Jason’s size and the complicated surgery we decided to rather first try the medication route. We had many complications with repeated infections and Jason got to a stage where he was basically eating enough to survive. At times we had to resort to syringe feeding him and eventually had to have a nasal gastric tube placed (a tube going down his nose into his tummy to feed him). The reflux worsened and we got to a stage where we had no option but to go ahead, have the operation and have a feeding tube inserted directly into his stomach in order to feed him. Jason had the operation when he was 1 year 3 months and weighed 5.3 kgs. He received his feeding tube on the 16th September 2008 after a complicated surgery. The surgeon advised us that Jason was failure to thrive, malnourished and his esophagus was raw from the acid burning him. Because Jason has such a high pain threshold not feeling pain he did not cry or scream from the reflux like any normal child would.
Jason was a tube fed child. He had his feeding tube for 9 years. Jason was born on the 8th June 2007 at 31 weeks weighing 1kg at birth. He developed silent reflux not long after birth and was diagnosed with severe reflux in November 2007. As the reflux was silent and he wasn’t vomiting we had no idea that he was even refluxing. He was constantly getting pneumonia and repeated chest infections. At the time he was diagnosed he was 5 months old weighing 2.9 kgs. Our options were to try helping the reflux with medication and change of formula or to have an operation to fix the reflux called a Nissan Fundoplication. Due to Jason’s size and the complicated surgery we decided to rather first try the medication route. We had many complications with repeated infections and Jason got to a stage where he was basically eating enough to survive. At times we had to resort to syringe feeding him and eventually had to have a nasal gastric tube placed (a tube going down his nose into his tummy to feed him). The reflux worsened and we got to a stage where we had no option but to go ahead, have the operation and have a feeding tube inserted directly into his stomach in order to feed him. Jason had the operation when he was 1 year 3 months and weighed 5.3 kgs. He received his feeding tube on the 16th September 2008 after a complicated surgery. The surgeon advised us that Jason was failure to thrive, malnourished and his esophagus was raw from the acid burning him. Because Jason has such a high pain threshold not feeling pain he did not cry or scream from the reflux like any normal child would.
Despite many attempts to get Jason to eat on our own constantly trying everything, we eventually heard about the feeding clinic in Graz and decided this was the answer to all our problems. We managed to raise R200,000.00 through the kindness and help of many wonderful kind and giving donors. The help and assistance was overwhelming and we managed to go to Austria in September 2008. Unfortunately this trip didn’t turn out the way we hoped. The basic principles of the tube wean program is to reduce tube feeds in order to make the tube dependent child hungry enough to eat and drink and with reduced feeds encourage the child to eat in a happy feeding environment having them around food constantly. Being hungry and thirsty the idea is they will start eating.
From day 1 we reduced Jason’s day tube feeds and started the program of reducing feeds, having daily play picnics and therapy all involving the assistance with eating. On day 3 Jason started getting temperatures, gagging and vomiting. It turned out that he had two infections Rotavirus and Norovirus, both of which cause terrible vomiting and diarrhoea.
From day 1 we reduced Jason’s day tube feeds and started the program of reducing feeds, having daily play picnics and therapy all involving the assistance with eating. On day 3 Jason started getting temperatures, gagging and vomiting. It turned out that he had two infections Rotavirus and Norovirus, both of which cause terrible vomiting and diarrhoea.
Although we could not continue with the tube weaning program with the rest of the group for obvious reasons of being isolated we continued with the starvation and encouragement to eat. We spent a week in the isolation ward and eventually decided to move out of the in-patient program and moved into a bed and breakfast for the duration of the program. By the time Jason was able to continue with the program he had been starved for a week and with the starvation, diarrhoea, vomiting and fevers he was extremely weak. We were eventually able to join the group again and not long after re-joining he started getting fevers again. After testing it turned out that he had pharyngitis which was treated with antibiotics and then that turned into bronchitis.
We continued with the program, Jason joined the play picnic sessions and continued with his therapies of occupational therapy and speech therapy. We found that although he was hungry he would not eat or swallow a thing and being so weak therapies weren’t going well at all. He was too lethargic to do anything. The therapists were even concerned and we decided with the team that tube feeds needed to be increased in order to get some energy back in Jason. We extended our stay by two weeks hoping that things would improve. It was very difficult for us going through a program like this with such a sick child, watching your child starving and the reason you are there is to help him eat, something that comes so naturally to every child. Jason got to a stage where he was so lethargic that at times he was too weak to even walk. This is when we decided it was time to start feeding him again. We could not continue with the program, Jason had lost too much weight and we needed our son back. We went home with the knowledge that we had learnt and decided when he got to a decent weight we could try the net coaching route (via email) with the team in Austria. The team in Austria were amazing, their knowledge and understanding on tube weaning is phenomenal and to this day they still assist us with Jason. While in Austria we also found out through testing that Jason is immunodeficient.
After gaining all his weight back we decided to try a second wean in December 2011. We again learnt that Jason is not one of those children that will eat or drink when starved. We tried for weeks and weeks with the assistance of the No Tube team. Again we battled with complications of Jason getting sick (vomiting and gagging). What should be a 3 to 4 week net coaching wean turned out to be weeks and weeks. No Tube has been a tremendous support but with Jason’s complications of illnesses we have not been able to get him fully weaned. We haven’t given up though. From not eating and drinking a thing he now at least eats his day food orally with a syringe 3 hourly and drinks water with a sippy cup. We still have to feed him with the feeding tube at night where he is attached to a pump and is fed a specialized formula. We cannot stop the tube feeding and night feeds because his calorie intake is too little for weight gain and also the complications we are having with his illnesses.
We continued with the program, Jason joined the play picnic sessions and continued with his therapies of occupational therapy and speech therapy. We found that although he was hungry he would not eat or swallow a thing and being so weak therapies weren’t going well at all. He was too lethargic to do anything. The therapists were even concerned and we decided with the team that tube feeds needed to be increased in order to get some energy back in Jason. We extended our stay by two weeks hoping that things would improve. It was very difficult for us going through a program like this with such a sick child, watching your child starving and the reason you are there is to help him eat, something that comes so naturally to every child. Jason got to a stage where he was so lethargic that at times he was too weak to even walk. This is when we decided it was time to start feeding him again. We could not continue with the program, Jason had lost too much weight and we needed our son back. We went home with the knowledge that we had learnt and decided when he got to a decent weight we could try the net coaching route (via email) with the team in Austria. The team in Austria were amazing, their knowledge and understanding on tube weaning is phenomenal and to this day they still assist us with Jason. While in Austria we also found out through testing that Jason is immunodeficient.
After gaining all his weight back we decided to try a second wean in December 2011. We again learnt that Jason is not one of those children that will eat or drink when starved. We tried for weeks and weeks with the assistance of the No Tube team. Again we battled with complications of Jason getting sick (vomiting and gagging). What should be a 3 to 4 week net coaching wean turned out to be weeks and weeks. No Tube has been a tremendous support but with Jason’s complications of illnesses we have not been able to get him fully weaned. We haven’t given up though. From not eating and drinking a thing he now at least eats his day food orally with a syringe 3 hourly and drinks water with a sippy cup. We still have to feed him with the feeding tube at night where he is attached to a pump and is fed a specialized formula. We cannot stop the tube feeding and night feeds because his calorie intake is too little for weight gain and also the complications we are having with his illnesses.
Jason has to get admitted every 3 weeks for polygam infusion via a drip which takes about 12 hours. Jason has combined primary immunodeficiency which means his body does not produce the T and B fighter cells to fight off infections. Polygam is blood plasma which basically generates those cells that he does not produce. Unfortunately even with polygam Jason gets so sick so easily. He suffers with chronic diarrhoea on a daily basis and suffers with vomiting and gagging when he gets ill, which is often. He catches everything going around, battles with rotavirus (having had it 4 times) as well as salmonella and bacterial infections. Having a feeding tube and being immunodeficient he is prone to catching these sorts of infections. We often have to get admitted for dehydration despite having the feeding tube as Jason gets to a stage where he vomits so much even on an empty tummy and vomits bile with nothing staying down therefore gets dehydrated very fast. Also with going to hospital so often including our three weekly visits (even being in an isolation ward), the risks are there of infections. With Jason’s complicated history of symptoms we have had many tests done in order to diagnose a condition but to this date we have not been able to come up with a positive test result. His paediatrician and neurologist say it is an autonomic problem causing his symptoms (vomiting, gagging, diarrhoea, blotchy red skin, increased heart rate, sweating and eventually dehydration) and we have also been told he possibly has mitochondrial disease. This needs to be confirmed by a muscle biopsy though.
With having a tube fed child and him being immunodeficient our medical expenses are HUGE. Jason is 10 years old. He is still in nappies due to the chronic diarrhoea. He does have demyelination on the brain but we are not sure if this is the cause for his extreme delays.. Obviously the difficult life he has had also contributes to his delays. He goes to speech and occupational therapy twice a week.
Our monthly expenses at the moment just for his schooling, therapy, syringes, medical aid and formula is R10,341.00 and that is without extra medication.
To read more about Jason you will note on the left side on the menu bar I have various pages about Jason including his
tube weaning program in Graz, which I updated daily. I also blogged about his second tube wean in December 2011 and continue to blog under the last tab on the menu titled Jason's Daily Updates.
If you would like to help assist us financially for Jason’s on going medical expenses the banking details are :-
EFT deposits :-
The Jason Long Trust
Investec current account
Account number : 50012036474
Branch code : 580105
Reference : Your name
Cash or cheque deposits :-
ABSA Bank
Investec Corporate Cash Manager
Account number : 4059749310
Reference : 50012036474
Please add depositors details
Paypal : [email protected]
If you would like to make a donation, please click on the link below.
I have also created a Pay Pal account, the email address is [email protected] or click on the donation button below to make a donation.
With having a tube fed child and him being immunodeficient our medical expenses are HUGE. Jason is 10 years old. He is still in nappies due to the chronic diarrhoea. He does have demyelination on the brain but we are not sure if this is the cause for his extreme delays.. Obviously the difficult life he has had also contributes to his delays. He goes to speech and occupational therapy twice a week.
Our monthly expenses at the moment just for his schooling, therapy, syringes, medical aid and formula is R10,341.00 and that is without extra medication.
To read more about Jason you will note on the left side on the menu bar I have various pages about Jason including his
tube weaning program in Graz, which I updated daily. I also blogged about his second tube wean in December 2011 and continue to blog under the last tab on the menu titled Jason's Daily Updates.
If you would like to help assist us financially for Jason’s on going medical expenses the banking details are :-
EFT deposits :-
The Jason Long Trust
Investec current account
Account number : 50012036474
Branch code : 580105
Reference : Your name
Cash or cheque deposits :-
ABSA Bank
Investec Corporate Cash Manager
Account number : 4059749310
Reference : 50012036474
Please add depositors details
Paypal : [email protected]
If you would like to make a donation, please click on the link below.
I have also created a Pay Pal account, the email address is [email protected] or click on the donation button below to make a donation.