Chocolate???

I wish life were less like a box of chocolates.

I got a routine call this afternoon, that ended up being not so routine~ The woman who worked at the hospital was calling to ask questions about Jonah (wondering what meds he was on, if he has allergic to anything) Then she gave me the time I was to have J checked into the surg room, then, she asked me about some strange disease they would also be testing Jonah for. I had no idea what she was saying, I wasn't familiar with the disease. She asked me to hold to make sure she had the right paper work. When she got back on the line I asked her for the spelling, and kind of shocked I hung up the phone and called our nurse and doctor.

Neither had ever heard of it, but while I was chatting with the nurse the Dr looked it up, I was also googling it (big surprise) He read off some symptoms and I read some symptoms. It was kind of scary. It is called Mucopolysaccharidosis. A more common name for this uncommon disease is Hunter Syndrome. I have been reading about it and I feel 99% sure this is not something Jonah has, but that other 1% is leaving me restless and making me have huge anxiety. Why would they suspect Jonah of this disease? Is it his stunted growth? His learning delays? I just was not expecting the receptionist to lay this on me.

So tomorrow is the big day. The day that once again Mr. J will have to be intubated yet again. hmmm, I think I know why he has air way issues ;) I am hoping and praying with all my heart that this will be a beneficial surgery. If it's not I just don't know what else to do. I am putting full trust in these doctor's that they will help my boy.

Jonah is coughing again. It is my fear that his lungs are failing every time I hear this cough. Most likely this isn't so, but it is still scary to me. I have read a lot about lung disease, CF, lung cancer and non CF Bronchiectasis. Yes, I agree, it is very unhealthy to know too much, especially when the Internet is so good about posting the most extreme cases. Oh my, this is just what happens when you have a chronically ill child. You become super paranoid, over barring and crazy!

I'm lucky to have friends who put up with me! XOXO