On Thursday I called the blood lab to find out the results of the urine test for protein creatinine ratio. The last result was 0.37 when Jason was healthy and the result from Wednesday was 0.75. So the levels have gone up again. A bit concerning for everyone.
Look Jason hasn't been well last week, having fetched him early from school on Tuesday with nausea and gagging. On Wednesday he wasn't 100% either during octagam. On Thursday on our way to school he was gagging and nauseous and vomited in the car so we turned around and headed home. On Friday same thing, just very nauseous, gagging and the odd vomit. He has been very lethargic, slept Thursday and Friday morning the whole morning and eventually came right when he woke up. Whether this is his cyclic vomiting syndrome, an autonomic problem, pure stress from the changes at school or his kidneys we are not sure. Jason has so many issues that could contribute to this and it's hard to say.
The result of the appointment was that Jason is borderline so hard to decide what to do. His levels aren't out of control but they aren't low enough for no concern. He doesn't want to rush and do the kidney biopsy but at the same time he is on maximum meds for his weight. We're just going to keep an eye on it for now. Monitor the protein creatinine ratio every octagam infusion and see how it goes. Wait for his operation to go ahead and see if that makes a difference as well.
Hydration is a big thing, he dehydrates very easily with his chronic diarrhea and urinating. We have to keep an eye on his fluid levels. Dehydration also causes an elevated protein creatinine ratio.
With all Jason's other issues it's hard to tell if it's just the kidneys that are a problem. The elevated levels could be secondary to the actual cause which is undiagnosed. Possible mitochondrial disease which is yet to be determined.
So for now we wait, go ahead with the operation, try and do the muscle biopsy to test for mitochondrial disease and take it from there.
I am happy with the outcome. We don't know yet what is happening with his kidneys but we will monitor it for now. Like all Jason's other symptoms and problems we just have to take things one at a time. God knows what is best and I just keep my faith and trust in the Lord that whatever is meant to be for Jason will happen. When you are in situations like this, a sick child, a sick husband or wife, a sick parent, what can you do but have faith and wait and see. We cannot predict the future but we just have to go with it and see what happens. It is hard watching a loved one so sick right in front of your eyes and there is nothing you can do about it. You cannot take their illness or pain away from them BUT you can pray for them, you can believe in healing, you can trust that God is in every situation. Just lay your hands on your sick one and believe that healing will come in God's time. Never give up faith and hope. Sometimes our faith is tested yes. Believe me I know, my faith has been tested a lot lately but this is not God's doing. God only wants health and happiness for each and every one of us. So keep the faith, keep strong, keep praying and BELIEVE for a miracle and BELIEVE for God's divine intervention in your situation. Never forget that!!