So this morning started off with a fever - not a huge surprise to me. Our daughter Nicole has been very ill with bronchitis for about a week now. She gave it to Bruce and myself where we were down with fevers on the weekend and chesty. It was a miracle that Jason hadn't started it. He has had a snotty nose, post nasal drip and when you make him cough it sounds like it's in his chest but isn't. I haven't felt that he has been affected by it though - most kids have snotty noses and a post nasal drip! This morning we did Jason's usual blood tests, added some specific bloods requested by Jason's paed and nephrologist and started polygam by 9:30am so pretty smooth sailing. This afternoon we had another fever spike which was quite a high one with Jason shivering, rosy red cheeks and very quiet (whispering which is a tell tale sign as well). His tummy hasn't been right as well with terrible poos again (again nothing out of the ordinary for Jason). Luckily all of this happened when Jason's paed arrived. He managed to see the fever, see the tummy and the bedding having to be changed. His bloods showed his CRP levels are 8 which is high. C-reactive protein is produced by the liver and when the level rises this is an indication of inflammation in the body - infection. So with seeing and hearing the problem tummy we have sent a nappy for a MC&S stool test which will tell us if there is any funny thing in the digestive tract - any viruses etc. He also has taken a swab from his mouth to test for possible respiratory infections. So basically today we have tested Jason's blood, his urine, his saliva and stool. A full check up.
I am baffled myself - I hate guessing games but with Jason this is the norm for us. We are always guessing with him, we never know what may happen. We have 50mls polygam to go, we are on our 5th pair of shorts, second set of bedding and Jason is hot and cold. Are we going home - yes I don't want to stay here and play guessing games. The results we will only see in about 2 to 3 days. What's the point sitting in this hospital room sleeping on a chair. I have had worse. We don't have gagging and vomiting thank goodness (toughing wood). My daughter and my husband need me. With Jason he could be absolutely fine tomorrow like NOTHING happened. What does concern me is the protein creatinine level is 4.57 which is a big worry. Dr. P said that this is probably elevated because of the infection but in the two years we have known Jason has chronic kidney disease even with infections it has never been this high. I guess we will see what Prof B says. He is the kidney expert.
The crappy thing that is going through my mind is will I make it to work tomorrow. Will Jason be fine tomorrow to go to school. With Nicole being sick we have had to juggle work around, her school closed early today because of a government teachers strike and probably won't be open tomorrow. Jason is not well and I am thinking about work and money. Every day off work is 5 hours less pay. I hate it. I have already had 3 days off work this month. Last month my salary didn't even cover school fees SIGH. Yes I am thinking out loud again and yes most of you probably think I am mad but when you are a mother of a chronically ill child unfortunately you have to juggle your life around your sick child, work and trying to get through the month. It's really sucky and we really need a break. I know this isn't a major for us but it's another and another always sets us back. Another always makes me worry about Jason, worry about finances, worry about trying not to worry. I guess for those reading this you will only understand and get what I am saying if you have or are in a similar situation. I was chatting to a friend of mine today in a similar situation, we don't have an option we have to go to work, we can't just stay at home and be with our children who are ill. I guess in a way it is a good thing. Work is my escape. I love work! I love my friends at work and I love having my time out not to think about our daily struggles. I get to worry about work stuff and totally forget about Jason being sick. What I hate is trying to get to work and just trying so hard. I don't have an option to not try. Thank goodness I don't give up trying because I would really make myself go batty. I have learnt through our experiences that no matter what happens you will get through it.
Tonight is probably going to be a long night with this stomach of Jason's. I am probably going to be up tonight changing nappies and bedding and checking fevers BUT it's not like I am not use to it. I am up every night at least 2 to 3 times a night with Jason's feeds. We are almost done here and first thing I am going to do when we get home is give Jason some Imodium to hopefully help his tummy and put my baby to bed. I just wish I could take it all away from him but I can't. It's not my fight to fight. All I can do is keep the faith, pray for our little man and continue to swim.