When I last left off we were leaving hospital after a 7 day admission after all those tests that needed to be done for Jason's nephrotic syndrome. We have since had 3 polygam infusions - one being today.
The results of the tests unfortunately didn't give away much. Jason's nephrologist did say a kidney biopsy is warranted based on his findings and the results. He said it is hard to say what more the biopsy will give us but it may be the only way to know for sure what state the kidneys are in. The bottom line is that Jason still had higher than normal protein loss in his urine and his renal indices show that this is most likely due to some underlying pathology. It is difficult to say what, whether it is due to one of his many conditions or due to his prematurity and being born so early (at 31 weeks). At the end of the day he has nephritic syndrome that needs to be treated and the treatment plan at the moment is not helping. Bruce and myself have not wanted to do the kidney biopsy just yet - basically because we don't want to rush into it, we wanted to get over Christmas and New Year and we wanted to give Jason a break and make sure it is the right thing for him. It's a hard decision to make as parents but we have delayed it and are going to first try and see whether altering his medication may help by adding a steroid to his medication. Again we don't know what the result will be but it's worth a try first. Tomorrow we will get the latest protein creatinine ratio results and I will contact his nephrologist again in order to go and see him to discuss the treatment plan forward.
Otherwise Jason is doing well. He has had these strange fevers that come and go with a post nasal drip and mucous but it doesn't seem like anything serious according to the bloods done today. Dr P said that his white cell count is low as well as his neutrophils (which is pretty normal for Jason). His CRP (infection markers) are normal so it could be a viral infection. We just need to treat the symptoms and make sure he has his chronic antibiotic and this should cover.
Eating wise - eating isn't great at the moment and neither is his weight but we will continue to keep trying like we always do. He has been eating little bits of scrambled egg in the mornings with us as well as the normal soft foods that I feed him, his yoghurts, custard, mash and gravies. Besides two pieces of pizza the one day over the holidays he hasn't been keen to try anything. Hopefully this is just a bad patch and will improve. I continue to pray for God to give Jason an appetite, to give him the senses of smell and taste and to WANT food not totally hate it. It's always so hard to understand why he doesn't want to eat and why when he sees his family and friends eating he doesn't want to join in. Patience and persistence!! We will never give up and we will beat this. I am watching him drinking water at the moment out the cup. Something he doesn't do well but he's handling it well. He's experimenting and still learning the art of drinking out a cup. Eating and drinking teaches the muscles and the swallow reflex what to do and this isn't something that is natural for him. He will slowly learn all this and one day it will be as natural to him as it is to you and I.
Other than that Jason is doing well. His speech and communication is coming along so nicely. He is full of beans and happy. We had a lovely family holiday down the south coast with Jason and Nicole's granny and grandpa at our happy place. He had a wonderful time with his granny, grandpa, uncles, aunt, friends and cousins. He spent his days swimming and on the beach. He even got a bit sun burnt the one day which was on purpose as he is lacking vitamin D. He's just amazing even if this mommy is allowed to say so herself. Man I love him so much!!
It's a new year, new beginnings. I haven't set myself too many unrealistic goals. Our plans for Jason is to just continue as we are and continue to push eating, drinking and keep on top of his health issues, keep him healthy and happy. Continue to push him where pushing is necessary and watch him grow and thrive. What more could two parents want?