Prof B (nephrologist) came to see us and discussed the protein in the urine. He is quite concerned especially due to the fact that Jason's bloods and urine tests didn't show any sign of infection. Had he had an infection this would elevate the level but with no infection he was concerned and this is the third time we have tested with the high levels. He has increased Jason's medication and we will test again when we do octagam and see what the levels are then. If the levels don't improve, Prof B will need to do a kidney biopsy on his kidneys to give him a better idea of what is going on. My poor baby, it is very upsetting to me knowing that he is having these kidney problems and we don't know enough about it. I always think the worst, it's in my nature. I am trying to put it at the back of my mind but it is very difficult.
What Jason had was more than likely a cyclic vomiting attack caused by excitement of going to my brother's? With cyclic vomiting syndrome, situations that cause great excitement like birthdays or holidays can trigger an attack. Once Jason starts it is very difficult to stop. Of course infections trigger attacks but according to the tests Jason had no infections. I know it sounds crazy but there is such a thing. We often have friends come and visit with their kids and Jason starts gagging out of pure excitement. Sometimes just going outside to swing he can start. So this was more than likely an attack from his cyclic vomiting syndrome. As you can see in the pictures below his body reacts violently. He can't control the nausea, retching and vomiting. His fever shoots up, his ears go bright red and he gets blotchy patches on his face. When he is like this there is no ways we can attempt to feed him. We can only rely on his feeding tube for water and medication and that too often gets vomited up until he is eventually vomiting bile. This is when we have to get admitted for a drip for dehydration. After this admission it dawned on me that Jason may have his feeding tube longer than we hoped to keep him hydrated, nutritionally well and also because of his kidney problems :-(.
The bad news is we are back for octagam next week. The thought of another admission for the day and having Jason going through being dripped again kills me. More time off school and work but what can we do. We got to do what we got to do.