Less than 12 hours

The final count down is on. In less than 12 hours Ben will be back in the operating theater for the second part of his mandibular distraction surgery.

It will be a relief to get rid of that external hardware, and the internal hardware too for that matter. However at the same time I am dreading it.

This time I am on my own. I don't have anyway to wait with. No one to distract me to keep me from watching the second hand on the clock as it seems to be stuck in the same spot.

While I know these doctors are experienced and more than capable at what they do, there is always the fear of the unknown. Any time someone has an operation there is risk, even if it is small. But lets face it...so far odds haven't meant much to us.

This is a bit earlier than what Dr. Hong had wanted to remove the device. He said the optimum time frame for the bone to ossify is 10+ weeks. We are only at 9 weeks. With all of his infections and pain, I can't help but worry what they may find when they get in there and what that will mean for Ben's course of treatment. Also there is the worry of post op infections again. Ben has been on antibiotics 8 of the 10 weeks post op already with only a few days break here and there. Every time the antibiotics were stopped the infection came back full force. It has been a nightmare and I hope this surgery will be the end of it! I worry about his breathing, I mean Pierre Robin babies are noted for breathing issues galore!! That with anesthesia can be a recipe for disaster. Nothing went wrong last time and his breathing was horrible so really the odds are not for anything happening, still given our track record I'd be a fool to dismiss it.

Then there is the feeding issues. Babies with Pierre Robin often have ongoing feeding issues. I have noticed even with just the infection that Ben doesn't take what he should at a given feed and I have to pretty much sit with him all day forcing him to eat, what he can, whenever he can. Luckily doing this until the infection started to become in control again allowed him to continue gaining weight and avoid another NG tube and pump feedings. I HOPE that his pain control is better this time and that he won't be so sleepy for so long. That his feeds can go back to normal and within a few days be home...or at least to my parents place.

I really should try to sleep but I am not sure I am going to be able to. Our room in Ronald McDonald House is in the basement, and I believe we are right below the toy area, given the thumping and banging, and other bizarre noises coming from above. Since Ben is asleep in his car seat I may take him in the bathroom with me so I can have a shower, since I believe for the first time since I arrived hours ago, the bathroom is free. The house isn't the same without our friends here. I miss Jeff and Cherlyn. This place just isn't they same without them. There was warm food waiting, and loads of friendly people, yet I wanted the comfort of a couple familiar faces and good friends.

I will try to update as much as I can tomorrow. Hopefully as things happen, since I am alone and need to keep my mind occupied so I don't end up admitted to the psychiatric ward.

T-11.5 hours....and Ben will be in the OR...Here we go again.