The chest xray revealed that he has pneumonia. So that confirmed the decision to stay and I went home and packed for a week (we never stay less than 5 days with Jason). IV antibiotics are normally 5 to 7 days. So the plan of action was IV antibiotic, nebulizing and physio to clear the chest and the nose.
Friday night we didn't get much sleep at all. Nebulizing was every 2 hours throughout the night. I am sharing Jason's bed and he has tendencies to sleep like a star fish all sprawled out at times :-). I am sure my snoring is making up for it. Nothing like sleeping with my little boy. Love him to bits.
I spoke to Dr P regarding seeing Prof B the Nephrologist (kidney specialist) as he wanted to see me for a follow up visit to discuss the kidney test results. Dr. P tried to get hold of him and couldn't so he decided to do a first morning urine test the next day to check the level of protein in his urine.
Saturday morning we did the urine test and as the results were being printed Prof B returned Dr. P's call. The protein is meant to be 0.0 - 0.2 (that's normal). Previously Jason's was 0.77 on medication which they weren't happy about and this result was 3.68. Prof B's words were "goodness, that's not good" and he would be here to come and see us.
Prof B came in the afternoon. The results of the findings of all the kidney tests were that there was no scarring on the kidneys which is good. There is damage due to the protein in the urine. This was revealed over a week of tests. He was pleasantly surprised as he thought Jason's results may be worse. He advised that Jason has level 1 kidney disease. His question is whether to treat or not. Jason is already on enalipril which he has been on since April. He wanted to repeat the urine test in the morning and see the result of that and he would come and see us again.
We continued with nebbing and physio twice a day. But Jason has been very chesty coughing a lot and very congested in his nose. We had to suction yesterday to clear his nose. This definitely helped. Last night he had quite a "whistle" when breathing so his chest isn't great. He is still weeing a LOT. We often have to change the bedding and I have him lying on a towel as well. Best nappies on the market as far as I am concerned.
I didn't sleep too well trying to process all this new information and added diagnosis. It's a lot to take in but we've got to do what we've got to do. Whatever is necessary to help Jason.
Just keep swimming.... just keep swimming. At this rate I am going to have to get myself a pair of gills and fins!!