The paed always does a full blood count and a blood culture to check for infections. Everything was fine with him besides being dehydrated which he ALWAYS is. No matter how much fluids he has (which he has A LOT) he is always dehydrated and that is due to the loss of fluids because of the constant diarrhoea. I really thought this time would be different as he had been better with the diarrhoea so I was pretty disappointed by this.
We also had an opportunity to meet with Jason's dietitian to go over his nutritional requirements as well as for the dietitian to help us with a motivational letter to motivate to medical aid to cover Jason's requirements on chronic or PMB (prescribed minimum benefits). Having gone through the calories and fluids that Jason gets in a 24 hour period, it was confirmed that he is getting the right calories for his height and age and the right amount of fluids but due to the chronic diarrhea this is having an impact on his weight and hydration levels. With the diarrhea we cannot control his calories and fluid levels. What's going in is just coming out as fast. This is something I have been fighting for the doctors to see for years but no-one can actually give us the cure for the diarrhoea. Anyway at least Jason is growing in height. His weight is a problem. We have discussed changing his night formula to a higher calorie formula which will help with catch up growth. Instead of 800kcals he is currently having he could receive 1200kcals with a 1.5kcal formula. Jason has been on nutrini peptisorb for a few years now and it seems to be the only formula that agrees with him. It is a semi-elemental feed which is specifically for malabsorption, malnutrition and maldigestion. Basically this formula helps with patients with GI disorders. The other alternative would be Peptamin Junior advance which is also a semi-elemental feed but with higher calories. We don't know if this will agree with Jason first of all so I have asked the dietitian to try and get samples to try it out. The problem though is I received the price for the Peptamin Junior advance and for a 500ml ready made hanging bag feed is R145. We are currently paying R90 for 500mls of Nutrini Peptisorb. So from a cost factor we cannot afford the change anyway. There is no ways we can pay R232.00 a night for his formula. Already we cannot afford the R144.00 we are currently paying.
It was good to see where we are medically with Jason. All the stool test results are back, they are all clear - surprise, surprise!! He is still dehydrated so we know we need to push more fluids and we know where we stand from a nutritional point of view.
It is very frustrating that no matter what we do it's just not good enough. I know it's not a fault of ours at all but no matter what we try it just seems to fail. No matter how much we feed Jason, no matter how much fluids Jason gets, it just comes straight back out and he isn't gaining the weight he needs to gain and he isn't staying hydrated. Unfortunately weight gain and hydration go hand in hand with illnesses. If you are underweight, not nutritionally well, your chances of getting sick increase that much more. Added to that is Jason's immunodeficiency so not so easy keeping our little boy happy and healthy. BUT Bruce and I never give up, we just keep trying. We are use to this and we will come out of this victorious one day with a healthy eating child. ONE DAY!!!