I saw Dr. S this morning who is standing in for Dr. P. He said that he cannot discharge us with this amount of fluid loss (which of course I wouldn’t leave either). He is happy that the fevers are down. The stool test was finally in and Jason does not have rotavirus, adenovirus or salmonella. I was horrified when Dr. S told me this; I had convinced myself that he had at least one of these. The fevers Jason had this admission - he has never had such high temperatures before and the amount of stools he has had have been the worse he has had. He has had rotavirus about 4 times and salmonella about 4 times so this is why I was convinced. The only difference is he has not been vomiting and he has never had such high fevers. So the only things we actually know is Jason’s red cell count is low indicating infection and we know he was bitten by a tick. SO we did a blood test and wait to hear if perhaps it is tick bite fever? I don’t know so much that we will get a positive result. It is after all a week later and he has already been treated for it!
Today the diarrhoea was much better and no fevers. Jason was still very lethargic and weak and dehydrated. Extremely quiet and pale. The two of us managed to have a nice afternoon nap together which was great. By this afternoon he was sitting up and looked so much better. His stomach is still very noisy but I am sure in time that will improve. Not surprising the amount of medication going in his little body. I went to fetch his formula tonight and was horrified at the amount of bottles of medication and vitamins in his drawer. He is on 3 antibiotics at the moment, 2 via the drip and one orally, he is on 3 different medications to try help bind the stomach, he is on 2 probiotics, a variety of medication for fevers and the rest I think is vitamins. I hate medication and hopefully by tomorrow we can stop the 2 iv antibiotics as it is day 5 today. They normally do it 5 – 7 days.
Anyway all Jason’s results have been negative. I don’t feel great knowing that. I don’t feel great knowing we have had to be in hospital for 5 days so far and he has “nothing clinically” but physically he is so sick. It’s very discouraging when you have a child that is so violently sick all the time. We treat the infection or symptoms and go home until the next one hits. A lot of people ask me why and make suggestions with regards to foods, tests, diseases etc. Jason is immunodeficient which means he basically has NO immune system to fight infection, viruses and bacteria. This is why we have to stay away from ANY illnesses as Jason will get it. All our family and friends by now know that if
they are sick they cannot be around Jason. We simply stay away or ask them to stay away otherwise it’s a hospital visit for us. Jason has NO allergies and he is on the best (and most expensive) formula on the market to keep him nourished. I follow the advice of a dietitian and Jason gets a variety of foods to help build up his immune system. He is on the best probiotic on the market to help his gut. We have been to many doctors and specialists and no-one can give us answers as to why even when he has no infection he has chronic diarrhoea, gagging and vomiting. He is not allergic to anything, we have seen a gastroenterologist, had biopsies of his stomach and colon and still nothing. It’s heart breaking for Bruce and myself to watch Jason suffer the way he does and he always is a happy child and takes these knocks and bounces back. The sad thing is he just gets hit with the next thing and there is nothing we can do about it. Even with polygam every 3 weeks he still gets sick. Hospitals are a part of our life. I am so use to it. Frustrating yes but what can we do.
I will NEVER give up trying to figure out what is wrong with Jason. I don’t believe there is nothing wrong and I find the saying “this is Jason” is unacceptable. I will not accept that “this is Jason”. I will continue to fight for my son. We may not find a diagnosis or a name for what Jason has but that doesn’t mean I will give up trying. No mother would. I know God is in control of
every situation and I know he has been by our side from day 1. He knows our prayers before we have even prayed them. He knows Jason from the tip of his head to the tip of his toes. He knows my little man. Jason was only loaned to Bruce and myself to care for and that is what we do and we do it to the best of our abilities. God has the answers but it's not up to us to question why. It's hard not to question but at the end of the day it's up to God our paths and Jason's path.
We may go home tomorrow if we have a good night with no fevers and diarrhoea. We will more than likely go home scratching our heads not knowing what was wrong with Jason this time. It’s very frustrating
and discouraging, one thing after the next and still no answers. Anyway
hopefully we can go home to be with Nicole and Daddy. I miss them terribly!!