Finally....A Good Note!!

There has been nothing normal about the last two and a half months with Bruce. His health hasn't been the greatest. He's on old folks medication and gets all kinds of tests and labs drawn each week. John and I know half the medical staff here at CMH and have regular conversations about Bruce's diagnoses and what's next in the plan to get him better.

And if you've only read one of my blogs in the last two and a half months then you know well enough that this has become the norm for us as parents. Rarely do we get to have conversations with positive news and never have we had a conversation like this before. Until Thursday.

The nurse practioner for our cardiologist called our room Thursday evening:

Her: "Bruce's echocardiogram came back normal."
Me: "Ah. Well, you mean normal for Bruce."
Her: "No. Normal."
Me: "Normal, normal?"
Her: "Yes, normal."
Me: "What does 'normal' mean?"

She went on to explain his heart muscles in the left ventricle weren't thick like were when he was born. By this time I was so shocked I blocked out rest of the conversation and it wasn't until the next day we ran into her and our cardiologist in the hallway did it really sink in his heart was normal. Luckily John was there with me to be witness!

Our geneticist, the doctor who in the beginning was the one who suspected Pompe Disease was the culprit of his heart disease, came to our room the next morning and looked almost as excited as we were as parents for the news. The enzyme treatment has made a tremendous difference in Bruce's health and thanks to her and her team who have fought so hard to get the Pompe diagnosis and the treatment ordered, we have seen our first and most important improvement being his heart. Medicine and prayers are powerful.

Bruce can never go without the enzyme treatment every two weeks and as his momma, I will make damn sure that whether it rains 20 inches or snows 20 feet, John will rowing us in a boat or blading roads with the tractor to get where we need to get. I don't think he will mind one bit! I have had days of doubt and in the beginning, I was a hot mess. John has always been a rock. He's never doubted and always kept me strong if I was even remotely worried too much. He's one proud daddy of his son.

Yesterday Bruce had another procedure to help drain his brain abscess. There wasn't as much gunk which can be a good sign but the witty neuro and his team of blondes are keeping close watch. The part of his brain that is being affected is what determines personality and moods and some motor skills. Yesterday morning, Bruce was full of smiles and was making great eye contact and melting his momma's heart. If any brain damage, I don't see it. Time shall tell but this is a strong kid. He's already whipped hypertrophic cardiomyopathy.

That's the latest and greatest health wise. On a sidenote, not all nurses are created equally and I've been getting into gangster movies thanks to Mob Week on AMC. But don't worry, I'm not getting any ideas.....yet. I also have been watching Shark Week on Discovery and I really want to swimming! I might just be getting a little stir crazy in these walls but I'm not about to stuff needle-toting nimwits down the elevator shaft or jump into a feeding frenzy of tiger sharks off the African coast.

PLEASE keep your prayers and good thoughts coming!! They never go unappreciated! Medicine may be working in Bruce's body but it takes more than just that to keep him getting healthy and his momma from tossing malfunctioning oxygen sensors that beep every five minutes out the 5th story window!