It is with a heavy and anxious heart that I have to tell you that Ethan is not doing very well. He got sick over the weekend with a cold that is going around his class. On Monday he started to get a fever and I thought, well it has been awhile I might as well test him to see what he is at. I was thankful that even with a fever he was just a trace. The next day he felt well enough to go to School, but when he came home he was really pale, and now that I think of it, we have been noticing his paleness for the last few months. Which is also a sign that something is amiss. Ethan also drank his entire water bottle at School and was still saying he was super thirsty, which is also not a good sign. Ethan does not like to drink water and normally does not drink a lot when he is healthy. When he is having protein in his urine, the thirst mechanism gets turned on and they want to drink a lot. But the problem with that is that it also signals to the body to keep all of the liquids he consumes inside his body. Which is is why he gets so sick, all the toxins in his body don't come out like they should through his urine.
I had this feeling late last night just before he went to bed that I should test him and see how he was doing, I can't explain why, I just felt like I needed to. Testing isn't something I have done a lot of lately either, unless he has been sick, then I do, just to make sure. I was utterly and completely shocked to find that he had protein and on the scale of the test strips he was in the middle, well above a trace. Which is what he was just the day before. After 3.5 years of Ethan being healthy and off all his medication. I honestly thought I would never see protein in his urine again. I guess I just finally relaxed to the point where I thought he had for sure has "outgrown" his Nephrotic Syndrome. As Ethan went to bed last night, I prayed for him that his protein would go away on it's own without any medical intervention. Over the last 10 years that he has had Nephrotic Syndrome, I can say that it only went away on it's own less than a handful of times. It is still possible of course and we are praying to that end, but as the day goes on and more symptoms appear. I am feeling less confident that this will be the case. I am so thankful for Ethan's teacher and so blessed that he is able to go to a Christian School. I emailed his teacher this morning to let him know what was going on and he emailed me back saying that they had all gathered around Ethan during their prayer time and prayed for him. Reading that brought tears to my eyes, and I have to say I am sure going through a whole range of emotions right now. One thought that keeps coming to my mind is that I know God cares for Ethan so much more than we do and will be with us if we have to travel down this road again. But I am so struggling at the thought of having to do this all over again, all the side effects, tests, medications. It was such a dark and lonely place for 7 years, I don't want to go back....
This morning when Ethan woke up his eyes were slightly puffy and I carefully documented his weight in my notebook, something we have to do every day while he is having protein. I also tested his urine and was disappointed that he had gone up one level to 3.0 protein. I made a doctor's appointment with our family doctor for tomorrow after school. We have to start all over again and get referral's to pediatrician's and probably for us to see a Nephrologist at Children's Hospital. I will keep you posted as to what I find out tomorrow, but for now we will watch and wait to see what happens. If Ethan continues to have protein and starts to gain weight, he asked that we take him to Children's Hospital in Vancouver rather than our local hospital. Which is probably for the best anyway, because we would be able to see a Nephrologist right away versus waiting months to see one by referral. When he has protein, he cannot wait months to see someone! So there you have it, we would really appreciate your prayers, hoping this turns around before any medical intervention is needed.
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