So in April 2013 was when we found out that Jason has chronic kidney disease. We were in hospital then for 40 days because Jason had various viruses and was just not getting better. We almost lost him that time and this is when Prof B stepped in to assist Jason's pediatrition. Prof B is a pediatric nephrologist, a real wise and highly respected professor in the medical field. When Jason was just not responding to the treatment during this illnesses Dr. P requested Prof B to assist with treatment. Without going into detail about this admission and problems, Prof B ran a few urine and blood tests and this is when it was picked up that Jason has protein in his urine. Sometimes when you are ill and also dehydrated, you can have protein in your urine but it is not something that you should have. Jason has had high protein counts for the past two and a half years under Prof B's care. This is despite starting medication and despite increasing the medication recently. Prof B has been fantastic with keeping up with Jason's case. Every polygam admission we check his urine results and every three weeks the count is too high. Last month we increased the medication and although the protein creatinine count has come down, it is still there and is still high. Prof B has been careful with his decisions and has not wanted to rush into any invasive tests but we are now at the stage where we need to know what is going on with Jason's kidneys and know the treatment plan. Kidney disease is known as the silent killer and we actually need to see what is going on with Jason's kidneys. In July 2013 we did all of the scans, blood and urine tests which only really revealed that Jason had stage 1 kidney disease. The tests didn't reveal too much which I guess is a good thing but then why the high levels of protein in his urine still. Time for us to stop guessing and do some more investigations. As I said before Prof B has been careful with his decisions and hasn't wanted to rush into doing the kidney biopsy but it's now time. We will get admitted on Sunday for a week of tests and the biopsy. I will only know more once we are there and will obviously update from hospital.
How do I feel about it? A lot of mixed emotions. Lots of friends ask me how I feel and obviously I am very anxious about it. The truth is I have been trying not to think about it too much as every time I do or every time someone mentions it I get butterflies and a kink in my tummy. The thought of Jason going through all those tests and a biopsy isn't nice. The thought of being in hospital for a week and away from home, away from Bruce and Nicole. I have been trying to prepare mentally regarding what I need to take with me. I have started doing mental lists, I have been thinking about things that Jason needs to keep him busy and entertained. Thinking about Nicole and what she will need while I am away from her. Saddened that I won't be home to do puzzles with her, to read stories to her and put her to bed. Away from her cuddles and hugs. Away from my darling husband knowing that he has to run the show, be the mom and the dad, he has to cook and see to the two of them. He is more than capable of course as he has done it many times with all of our many hospital admissions but it just doesn't get easier. I think as Jason gets healthier it gets harder. The hospital we are getting admitted to isn't close to home so I won't be able to just pop home and see Nicole and Bruce. Bruce won't be able to just quickly pop in to see us and to bring us things that are needed. Jason and I are on our own but we will manage. One positive we have is some quality time together. I can do some puzzles, some lego and some school work with Jason whereas at home we are always so busy with life and afternoon activities and therapy. I have told Jason about the admission. I don't know if he understands much - all he is excited about is a new play station game and me downloading new games for his ipad :-). Bless him!!
I will keep you all posted as we go. I am sure I will be able to do daily updates while in hospital so keep checking the website xxx
Time for me to get some shut eye before it's time to wake up to Jason's feed alarm beeping.