Dr P came this afternoon and was happy with how Jason was looking and happy that his temps are down. He said that if his temps stay down and not too much diarrhoea we may be able to go home tomorrow. I am able to keep him hydrated with the peg if need be. His temp at the moment is 37.1 so holding thumbs we have a good night and can go home. He also said we need to increase his night feeds due to the loss in weight and in order to keep him nutritionally well.
Granny and grandpa came to visit in the morning and spoilt Jason with all sorts of toys and mommy with some snacks to snack on. Daddy came to visit later while gran and grandpa watched Nicole. Bruce was so chuffed to see Jason looking better. Its hard being at home not knowing what is going on in the hospital. Bruce said he didn’t sleep well at all last night as he was really worried about Jason.
I am confident that we will be going home tomorrow. I am obviously not going to rush out of here if he isn’t well enough but the antibiotics have covered whatever he has. The stool test is not back yet (being weekend). I am not sure if we will get the answer tomorrow either. This usually happens we get treated
and by the time Jason is well we find out what he had.
I am looking forward to getting home. Hospital stays always gives me a reality check about Jason and his condition and how we have to be that extra careful due to him being immunodeficient. Dr. P said that we MUST give him filtered water only and by NO MEANS must we allow Jason to drink his bath water. So it looks like Jason will be doing a lot more showering – not a problem as he loves showering with mommy or daddy. We also would like to invest in a water purifier of some sort as in the long run it will work out cheaper than buying bottled water. We also have to be extra special careful with changing pump sets more regularly to avoid bacterial infections. These pump sets are really expensive as well as his night formula. If we had to change the pump sets every night and give him 700mls nutrini (which is actually what he needs) it would cost us R180 per night just to feed him. This is what we have to do and what is required to keep Jason healthy and nourished.
I received a message today from an old friend of mine who advised me that she has started a debit order on her account for a monthly payment to Jason’s trust fund. As much as I hate relying on donations this is fantastic as it will at least help us increase the amount of pump sets we can buy and in turn help prevent infection. My mom was saying today that we have to change pump sets every night. This is what we really need but financially we cannot afford it on mine and Bruce’s salaries with all of Jason’s medical expenses and therapy. It’s tough worrying about your child’s health knowing that certain things can be prevented but you cannot afford to prevent them. I am not saying that this infection was caused by this. This is a viral infection we are dealing with BUT Jason has had salmonella a few times and the stool test 3 weeks ago revealed E.coli was present. A lot of Jason’s infections can be prevented and we have to be extra specially careful with his drinking water and feeding equipment especially because he is immunodeficient and is prone to catching these things and having bad reactions to all this. A child with a normal immune system is fine to drink the house water but with Jason he can catch these things easily and best we prevent it.
I hope my updates are not boring, I am pretty tired tonight but know a lot of people are following Jason’s Journey and want to know how he is doing. Thanks to everyone on facebook for all the well wishes and encouragement. It’s great to have so many people care about our Little Man. I obviously worry about what people think about my posts and updates and I often think some of you must think “oh there she goes again”. BUT I continue my blog because there are people out there that are interested and are following Jason’s progress. I don’t just do it for myself, I do it for the people reading it. My blog is my thoughts, feelings and the reality of the situation not a place for me to moan and ask for money although at times is may seem like that. This is Jason’s Journey, this is our daily progress, and this is how it is.