Last month was a hard month for our little man. We tested him for Cystic Fibrosis (CF) and bunch of other scary illnesses. It was heart wrenching to watch the nurses up at Primary Children's conduct the tests. Dexter hates doctors.
Dexter does have ear tubes and got his adenoids out in July. Since then he has ruptured his eardrum, again, and had three more ear infections. This isn't good and is so frustrating. He has been tested for everything under the sun. So we need another avenue, because being this sick for this long isn't normal.
We at first got a postive result for the CF test. Then two hours later the doctor called and told me the nurse read the results wrong. Holy S*&T are you kidding me. Who reads those life threatening results wrong???
He follows the following pattern:
2-3 weeks of being sick, and then a week of improvements. But he is so dang happy. He doesn't sleep well at all, but when he is up he is happy.
Three weeks ago we saw "Dr. House"! Yes they exist. Karin Chen specializes in rare disorders and we love her. She was so patient with us, examined Dexter and we now have a plan. I am so grateful for her and for Primary Children's in Salt Lake. Dexter does has a rare strand of bacteria growing in his ears, that is problem number one. And the bacteria grows off of antibiotics, so all those antibiotics we have been giving him. Not good. We are waiting on blood test results right now. They are testing for rare blood disorders and genetic issues. Doctor Chen knows something is wrong and she said that she will figure it out. We have another appointment with the ENT that did his tube surgery on Tuesday. Dexter is most likely going to have a scope of his tracheal in the next month to make sure things are functioning properly. The ENT will perform this and also check the status of his tracheal malacia that he was born with.
Patience. Lots of Patience. Prayers. And more prayers.
Never a dull moment in this house. Never.
Oh man, so scary! I'm often Thinking about you sweet mama!
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