We have been waiting for the results on the urine culture since Friday but for some reason we were told to repeat the test today. Both Dr. P and Prof B have been waiting to see if something cultures but the first test was inconclusive and we are repeating the test. We probably will only know the results after discharge anyway as the test takes about 72 hours. I was quite curious to see what he has. We know he has a urinary Tract Infection because of the results of the urine test and also Jason is displaying the symptoms as well. Although he doesn't complain of pain he has had the excessive urinating, the fevers, the nausea and the diarrhea. Prof B is on the case because of Jason's kidney disease and the effects this can have on his kidneys. He needs to be closely monitored and this is why we have to stay the full course of the antibiotics. Whether the full course is 5 or 7 days IV I am not sure at this stage. I am not getting too excited that we may go home on Wednesday as history usually shows itself that we end up staying longer than expected.
Jason is a lot happier and has more energy than the past 3 days. He is starting to show lots of signs of boredom inventing new things to do in this isolation ward. I am finding it quite hard keeping him bottled up in the room as he wants to go out and play with the other children. Yesterday there weren't any sick kids, only theatre cases and he was able to go out but today the ward has filled up with infections. He has made some little friends and is dying to go out and play with them. Shame I feel sorry for him but the last thing we need is another infection. Today I managed to get to work for the morning while the nurses looked after him. My tax deadline is Friday and I have loads to do before then. It was nice to be back to the world of living. When you are cooped up in this hospital it feels like the world goes on without you. I am dying to get back to reality, dying to go home to my darling husband and baby girl. I am missing them so much and know Jason is too. Bruce is doing an awesome job with Nicole making sure she is medicated, bathed, fed, sent to school etc. She is a handful and he is doing an amazing job with her. Not easy for him working all day then having to go home to no meal cooked and a demanding 18 month old baby that is full of energy and runs until bed time. Bruce and I joke with each other when we see each other on the quick occasion. We are like two strangers at the moment seeing each other on the rare occasion. This morning on my way to work I drove past him but didn't see him. He jokingly whatsapped me and said he saw this "hottie in the white bullet" referring to me racing past him in my white taz lol. I am SO blessed to have such a caring and understanding husband, someone that has stood by my side through all we have been through. Not too many men would do what Bruce has done and gone through with me. A lot of them would have run a mile, but not Bruce. He has been with me every step of the way. He has stood by me and our children through all we have been through and we have been through a lot together. Our marriage has stood the test of time but we remain together and we both love each other to bits. It's times like these when you realize how lucky and how blessed you are to have such a strong marriage and such an amazing partner that will do anything for you. And shew we have been through a lot the past 6 and a half years with Jason.
I was chatting to the doctors yesterday and today about Jason getting sick so often even with the 3 weekly octagam infusions. His immune system is so bad that he doesn't even last the 3 weeks. Just before octagam he starts showing signs and symptoms of getting sick. Often I think close to 3 weeks "thank goodness we have octagam as Dr. P will examine him and do bloods etc." We have discussed the possibility that he may need a more regular infusions like every 2 weeks instead of every 3 weeks or the possibility that the dose needs to be adjusted. We will need to look at his bloods again to get his IGG levels to see whether they are improving or not. All I know is he isn't lasting 3 weeks and something needs to be done.
Tomorrow we are doing more send away bloods for some metabolic tests that the folks from Pretoria have suggested. With us going to Pretoria next Monday to see the doctors there has been a lot of "behind the scenes" discussions going on and Dr P and Prof B are constantly "thinking" and scratching their heads with Jason. Jason is unique, we all know that. He is one of a kind that has rare symptoms that can fit into a number of diseases or disorders but we cannot pinpoint that disease or disorder. Maybe we will get some results from the genetic testing that is going to be done in Germany, maybe we will get some answers in Pretoria. Who knows?? Every day and every test is a step closer to diagnosing Jason. Whether they are negative or positive, the negative tests at least rule out the possibilities. One day we will have an answer but until then this mommy will not give up searching for that answer.