May 7 Surgery details

Hi,

there are a lot of reasons why I'm so rattled about this surgery.

First, in normal kids this surgery is outpatient. In and out in a half day or so. For Jules, it turns out that what the surgeon said about "this being a dog fight to recover from," meant -- is that Jules will need to be put in the ICU after the surgery.

There is a risk in doing the surgery in a baby so young that his Uvula will swell up and require him to be intubated and put on the ventilator. The ICU is the place they do intubation -- so that is why we will be there. If we are lucky, he will make it out of there in a day or two and then get shipped to the regular surgery floor for best case scenario - two more days. So, best case is a 4 day stay. The reality is more like a week and I'm not thinking about worst case situations because we have already had a turn of those and I'd like very much for this to be a time he sails through something, heals miraculously, and gets out in the best case time.

Any mention of intubation and ventilators freak me out. This is because the reason Julian has lung disease most likely stems from injury to his lungs and scarring of his lungs from when they intubated him and put him on the ventilator in the NICU when he was born. His lungs are already so messed up, I don't want further damage. Plus, after spending so many hours in the ICU -- I know that people go on the ventilator and then sometimes don't come off. I am really scared of that happening to Jules.

Our last attempt at a surgery was for a surgical feeding tube right before we left the hospital last year. At the time, jules went all day without eating and then the doctor freaked out and refused to do the surgery. That has left me with some baggage about doing any kind of surgery on jules.

http://babysilver2.blogspot.com/2009/03/update.html

Okay, so this is super depressing, but I keep thinking about all the risks in a normal person for surgery and how compounded they are for my little guy and how painful it is to keep watching him suffer in so many ways - through these awful tests he has had, to all the special shots of synagis every month, to struggling just to eat or breathe, and it seems so terrible that he has to go through this surgery too. And I am sick to my stomach.

Joy