21 June 2010

Bad News - My son is sick

It has been a week or so since some bad news has been confirmed.

My 7 year old son was recently in the ER back in April with pneumonia. he was given some IV meds and sent home. We thought everything was well. About 10 days later, he had abdominal pain again and off to the ER. They gave him different Antibiotics and sent him home again. Within a day he spiked a fever of 105 and then again. This time he was admitted to the hospital for severe pneumonia with unknown cause. Not good. He then was given different antibiotics again via IV for the next 8 days. The worst part is he looked fine on the outside but was very sick on the inside. Unfortunately due to his illness our trip home was cancelled/postponed we have yet to see.
While there the doctors did all kinds of test trying to figure out what was going on. Towards the end of his stay there is a possibility that they may have discovered what it is and it is not good.
A few days later they confirmed their suspicions, my son most likely has a rare disease that effects his immune system called Chronic Granulomatous disease a.k.a CGD. The doctor decided that one test was not good enough and we tested my son again and the same results were returned a week later. So now it is almost 99% sure that he has CGD but 100% wont be known until after the results of the genetic testing that the National Institute for Health will be doing.
This has been very hard on me. I have read up on this disease and there are so many stories and some of them are very sad. I love my son with my life and can't imagine a life without him. I am so afraid of losing him. He is a constant joy to me. As this disease is so rare, there real is no support group in our area and the doctors are only vaguely familiar with it so I have to look for good sources on line.
He has had to start taking anti fungal and antibiotics that he will take for the rest of his life to help his small body fight off the things his white blood cells are unable to do. The danger infections for him are any bacterial and fungal infections. The worst part is that since his body can't fight these, his body does not show normal symptoms that he is sick. We have to be ever vigilant, watching for any little sign of sickness.
I wish I could be near my family but currently I don't have that option unless I want to quit my job and let whatever happens to our home happen. That is not a logical or realistic thought so I will continue daily to search for work closer to home.