Unfortunately I didn't get to do that update and now we have a setback and I feel like all my good happy news has been overshadowed by Jason not feeling well again. Everything was going well with octagam yesterday and then just before Dr. P came to examine Jason he started gagging and shivering and talking funny. I know the signs and my suspicions were correct he had a fever of 38.6. I was SO disappointed as I was very excited for Dr. P to see how well Jason was looking, how much weight he had gained and how well he is doing with his eating, drinking and school. Instead Dr. P walked into a sick Jason with a high fever and a terrible bum rash (which he has had for 6 weeks). My bubble was burst and instead of feeling great when seeing Dr. P I felt quite down and depressed. We haven't had any illnesses for a few weeks, since the beginning of December and I was slowly starting to feel human again. Slowly starting to allow myself to be happy and not so aware of everything Jason does or every little thing that may be a sign or symptom of an illness. It's hard, it really is and I am trying not to get down about this. Hopefully this will pass.
Last night he still had a fever so I just gave him water via the pump while he slept as I knew giving him formula whilst not feeling well will only make him nauseous, gag and probably vomit. This morning he was ok and managed his 200mls paediasure. He was a bit quiet but Jason does have his good days and bad days. He raced into school and I just warned the teachers that he wasn't 100% yesterday and that I had left the thermometer in his bag just in case. I got a call at 10:30 to say that he wasn't well and was gagging. My poor little man was ok when I got to him but on the way home he was all quiet and started gagging again. His temp was a low grade temp but I decided to give him calpol just to get rid of it before it went any higher.
The temperature in Durban the last few days has been in the 30s and extremely hot and humid. Jason has dysautonomia which is a symptom of mitochondrial disease. With dysautonomia there is a malfunction in the autonomic nervous system. When functioning properly the autonomic nervous system regulates the response to very basic changes such as temperature, walking, sitting, sleeping, eating, digesting food, thirst etc. With dysautonomia the response to these every day normal activities is an inability of the autonomic nervous system to regulate "typical" body functions. Jason simply cannot tolerate heat. He overheats, has abnormal sweating regardless of the temperature. In Winter we simply cannot cover him. If we do he will be sopping wet from sweating. SO these high temperatures and high humidity are basically too much for Jason. He overheats, sweats profusely and starts gagging which is his response to overheating. The best thing to do for him and the only thing is to put him in an aircon room and allow him to sleep. This is what happened today at school. He overheated, got a temperature, I put him in our bedroom in the aircon and he slept the whole afternoon.
He has been quite gaggy today because of the heat and temperature. I am hoping that there isn't anything else looming. His bloods yesterday didn't show anything to be concerned about. If anything the blood culture will pick something up. I went and checked on him earlier - he is sleeping in his room and he is sopping wet with two fans blowing on him. To try and have him in our room is not an option as he is fed via a feeding pump at night and to move his bed, pump stand and everything is not practical. An aircon for his room is something we are going to have to look into. It will make his and our lives a whole lot easier and at least he will be more comfortable at night and sleep better.
I received an email from Prof B this morning to say that the urine results showed that his protein creatinine ratio is a bit high at the moment. It is presently 0.78 (normal is 0 - 0.2). You should not have protein in your urine. For those of you that don't know, Jason has chronic kidney disease and we have to keep a close eye on his kidneys and do the necessary tests to make sure his kidneys are ok. This is concerning for me and something that we need to monitor. We will repeat the test in 3 weeks time. What concerns me is every illness has an affect on his kidneys and having combined primary immunodeficiency isn't good for infection control. Hopefully the octagam will protect him.
So unfortunately we have some set backs after Jason was doing REALLY well. Things have been going so nicely at school and his eating and drinking is coming along really nicely. He has been eating a yogurt every day at school and I sit with him in the afternoons encouraging him to eat and drink. I am trying to get away from the syringe feeding eventually and progress onto the sippy cup with his formula. I want Jason drinking his formula on his own. He was doing so well two years ago where he was drinking all his daily formula but obviously with set backs and illnesses and hospital admissions this changed everything. We need to progress forward and we don't need any set backs. These set backs set me back as well. My mind races away with me and brings back all the reminders of the past back to haunt me. I just want Jason well and eating and drinking. Something that is so normal and so natural to everyone else. I want my son to enjoy food, to experience the taste of a sweet or a chocolate, to look forward to breakfast/lunch or dinner not get goosies, sweat and gag when food comes near him. I know it will happen, I know it will. As Dr. Shaik always said to us "in Jason's time". I know things will come right in Jason's time. I look at the progress we have made. I look at how many years Jason has had his feeding tube for. He got his feeding tube at a year and a half weighing 4.5kgs. He is now 6 years, 8 months. It's been a LONG road for us and we have done everything in our power and beyond to help Jason to eat. I guess Dr. Shaik is right, "in Jason's time". But besides that, it's also "in God's time" and that time will come as well. This is Jason's journey and Jason's journey will end when Jason is tube free and eating! One day, one day!