It has been two years that the protein creatinine ratio in Jason's urine has been high. Normal range is 0.00 - 0.02. You should not have protein in your urine. Jason has had constant high levels and what is concerning for Prof B is that the medication should have lowered the protein in the urine to practically nothing. He is concerned about Jason's kidneys because it has been high even on medication for two years. I am meant to crush a tablet, give him half in the morning, mix the other half with 2.5mls of water and give him 1ml in the evening. I have been giving him half and half knowing that he has malabsorption issues and knowing his levels have still been high. The dose Jason has been getting is the same dose that Prof B gives to adults. For all of his patients this medication has normalized the levels but not in Jason's case. Scary when your doctor says your son is an "enigma" but he is dam right. Jason has always been an "enigma" with everything.
I have been thinking about this for a while and always aware and monitoring the levels. What I suggested to Prof B is maybe with Jason's malabsorption (diarrhea) issues he is not absorbing his medication like he should. Prof B said that this could be a possibility so what we have decided to do is stop the medication for a few days and test the levels next week when Jason is admitted for polygam. The levels should give us an indication whether the medication has been absorbed or not. If the levels are a lot higher this would mean that the medication is being absorbed.
Otherwise Prof B and I had a long chat about all Jason's issues In particular his kidneys. He advised me that he has been cautious with proceeding with the kidney biopsy but it is looking like we need to do it. He didn't want to over react but now he also has to be careful not to under react with the kidney damage. The only way for him to know what damage and how to treat is the kidney biopsy. He told me that in Jason's case due to caution he did all the other tests first and medication first and has been trying to avoid the biopsy. BUT unfortunately with the high levels and without doing the biopsy he is just guessing. The biopsy is done in theatre with sedation. A needle is inserted through the back and with an ultrasound they are able to locate the kidneys and take a piece of the kidney for testing. All procedures come with risks of course and this would mean hospitalization for 4 days.
How do I feel about it?? I know that this is a necessary next step that we need to take. We cannot ignore the fact that Jason has kidney damage and things aren't getting better. We need to go with the processes. See what the urine result says next week and take it from there. It's hard to watch your son, to hold him and love him knowing that we need to go through this procedure but what can you do?