Octagam was on Wednesday the 17th April. The day went nice and smoothly. We had a few blood and urine tests scheduled for the day, particularly tests relating to Jason's kidneys. Last Octagam the protein creatinine ration was 0.96 which was still too high. Normal is 0.0 - 0.2 (you are not meant to have protein in your urine). Jason has had high levels of protein in his urine since we found out about his kidney problems in April 2013 (when we were admitted during an infection for 40 days). The result was that the protein was 0.80 - a drop but still too high and this is on the increased medication. Jason's nephrologist has indicated that he would like to monitor this for another one or two months and if it does not drop to below 0.2 (normal range) we will need to have him reviewed with a view to doing a kidney biopsy. How do I feel about this??? Well to be honest I feel sick to my stomach, I constantly watch my little man and worry, worry, worry. I wonder what is going on in his little body. He can't talk and tell me when he doesn't feel well and when the signs are there he can't tell me what is wrong and where he feels sick. Again he has been having these fevers that come and go. I know they are to be expected after octagam because he has foreign protein in his body but we are on the third "set" of fevers tonight. Each episode that he has had he has had no other symptoms besides 40/41 degree fevers and of course the gagging and odd vomit because of the fevers. It is a worry of mine as I am concerned it is his kidneys. With Jason it COULD be anything, it could be his immune system not fighting something, it could be his cyclic vomiting syndrome, it could be his familial dysautonomia and it could be his chronic kidney disease. Too many questions but this has been a part of my life for 7 years, more questions than answers. At the end of the day the good Lord above is watching over Jason and he knows what is best for Jason and what needs to be done. Jason's path was set the day he was created. I just have to be the one that tries and puts the pieces of the puzzle together and the one that walks the path with Jason (obviously with Bruce and Nicole by my side). Being a mom is hard, having a "normal" pregnancy and child is hard in itself but having a child that was born 9 weeks premature and a child that is sick and has special needs is a huge challenge. I know I don't only speak for myself. I have plenty friends that I have met through Jason's Journey that have had premature babies, that have sick kiddies with immune deficiencies and other illnesses and also special needs kiddies. None of us were given the "manual". Our "what to expect when you're expecting" and "what to expect the first years" was NOTHING like the norm. Jason certainly wasn't the norm but he is my perfect little man.
We had a wonderful family getaway down with granny and grandpa. Something we all needed - a perfect break for us all. Jason was in his element. He loves his granny and grandpa so much. For him to be down at the beach every day in his happy place, he loved it. It's so lovely to watch his free spirit, watch him snorkelling with granny, playing in the sand, smiling and happy. What a darling perfect little man :-)