Although Jason has been very gaggy lately his bloods actually looked good. His lymphocyte levels were NORMAL and he was not dehydrated. Lymphocyte levels are infection indicators therefore he had no infections and for a change he was not dehydrated (which he always is). So happy days there!
Feeding has been very difficult and weaning/oral feeds are out of the question at the moment. He is too gaggy to even take his tube feeds. At the moment we continue with just trying to get as much calories in as we can. He is meant to have 800mls Neocate during the day and 800mls Neocate overnight. Unfortunately we can only feed him 50mls at a time and therefore we are basically feeding every hour 50mls. It is tiring and I spend my day feeding but it’s what works for now. With the small volumes we are unable to reach the 800mls but as long as he is happy, can do his school work and can play I am fine with that. I would rather have a happy child than a child that is so ill and vomiting. On the long weekend while away all of us caught the bug and every one of us were vomiting. Jason seemed ok besides the gagging but he started the next week with vomiting and diarrhea. At lease he managed to overcome it without a hospital admission as bad rotavirus is going around.
On the long weekend we all went down the south coast with my folks, my brother, sister-in-law and two nieces. Besides the bug that we all had we had a wonderful time. I just didn’t feed Jason during the day in order for him to actually enjoy himself. He was too gaggy and I must admit I have relaxed a lot about the gagging and come to realize that I cannot force feed him if he isn’t well. I would rather have a happy child than a sick child. Jason had a fantastic time with his two cousins – jumping on the trampoline, running around like a hooligan and fishing with his dad.
Home schooling is going really well with Erin. Jason has come along in leaps and bounds. The one on one attention he is getting is definitely benefiting him and the progress is huge. Yesterday I watched in awe while he did a 20 piece puzzle for me all on his own. Two months ago this was not possible. God sent us an angel called Erin and we are so grateful that she came into our lives. Erin is fantastic with Jason and the wonderful thing is she helps feed him via the tube. Thank goodness for that as with the 50mls an hour we would miss out on a lot of calories if Erin wasn’t helping. We are so blessed; most people run a mile when it comes to feeding Jason yet Erin right from the beginning was happy to help. She has also learnt how to “read” Jason. If he is gaggy she knows to leave the neocate and rather give water. With this help, this has enabled me to go to work more often and not miss out on days worked and my salary.
Despite the gagging the neocate is really agreeing with him. It is expensive but it is the ONLY formula that doesn’t go right through him and he is at least absorbing it without the constant diarrhea. From about 6 poo nappies a day to 1 or 2 is HUGE. Even with the reduced calories his weight is still good - 15.8kgs. His whole life he has had diarrhea and this is the FIRST time he is diarrhea
free.
I am still fighting medical aid to help pay for Jason’s nutritional requirements under PMB (prescribed minimum benefits). Our medical savings is finished. Unfortunately they have declined a second time. They acknowledge that Jason’s immunology condition is a PMB condition but their treatment for the immunology is polygamy/octagam. They will NOT assist with the nutritional requirements despite all my attempts to explain to them that pump sets and pump bags will prevent him getting sick from an infection control point of view and also the neocate is a medicated formula that assists with his chronic diarrhea, kidney problems and is assisting with weight gain and good nutrition which is vital for his health and immune system. So unfortunately we have lost that battle again. I cannot believe that despite all the problems, symptoms and the condition that Jason is in they will decline it. They have advised me to apply for an ex-gratia benefit which I will definitely do. We tried this years ago when Jason first received his feeding tube and that was declined as well. I won’t give up. They have agreed to pay for ONLY 4 weeks of speech and occupational therapy which I think is shocking as Jason has been going to speech and OT for 2 and a half years. How is 4 weeks going to benefit him?? After the 4 weeks they want a progress report from the therapists and they will review further. How much progress are you going to get in 4 weeks?? That’s the problem with our health system here in South Africa. If you have a really sick child, you are on your own!! We have medical aid yes but we pay a fortune for medical aid and still they decline the needs of our children. If you need a diagnosis again you are on your own, you have to source out the specialists and run from one doctor to the other, one province to the other scratching your head and hoping that you are seeing the right person. There is only one children’s hospital in Cape Town and no such thing as NHS. There are a lot of families in the same position as we are and it’s very sad as these children and their families are not getting the care and support they need. Most of these children are not on the right formula for their condition
as the formulas are too costly and there is no support financially. To try and get a diagnosis is almost impossible. I know if we had to go overseas and see doctors over there we would more than likely have all the necessary DNA tests done and we would have a diagnosis BUT we are not prepared to move and going over there for a “visit” costs huge amounts of money.
Anyway got a bit distracted there with my thoughts!! In the near future we will be seeing the paediatric surgeon to discuss the urology problem. I have an appointment with a “feeding/weaning” clinic that has just started in Durban. If anything, if this feeding/weaning clinic can’t help with eating, maybe they can help with his medical issues. As far as I am aware there is a team that consists of a pediatrition, a paediatric neurologist, a paediatric surgeon, a speech therapist, an occupational therapist, an audiologist and a clinical psychologist. I am prepared to try everything in my power to help Jason to eat and very excited to meet the team. We will also be seeing the kidney specialist in a few weeks time to investigate the kidney problem. Then I would like to go to Cape Town to see the immunologist and I would also like to see a geneticist but as far as I am aware they are in Johannesburg. Yes, as I said earlier you are on your own and have to go from one province to the other, one specialist to the other and financially you are on your own. We will get there, one step at a time!! This is one war that I will NOT give up. The war to get my son healthy, diagnosed and eating. This is Jason’s journey and Jason’s journey will end when he is eating. The journey started out so small and so simple, a trip to Austria to a weaning clinic to help Jason to eat. The trip was the best thing we could have done. We didn’t get the end result that we hoped for but this was the start of the process of helping Jason to eat and if we hadn’t gone to Austria we wouldn’t have found out that Jason is immunodeficient. The team in Austria got us started on Jason’s road to recovery and we are forever grateful to them and every person that made that trip possible. The No Tube team is amazing and if you can afford a tube wean I highly recommend them. We saw miracles happen in Graz. Children that hadn't eaten in years starting to eat and their feeding tubes removed. We had our own miracles with seeing Jason eating and drinking. Unfortunately due to health reasons we haven't been as lucky but ONE DAY!!