It's really hard to believe something so small is going to keep Jake alive. The ICD fits in the palm of my hand. Technology is amazing. We met with the surgeon today, Dr. Mark Link. He passed an ICD around for us to see. He explained it will be placed below Jake's collar bone in between the layer of fat and muscle. He also said you will be able to feel it under the skin and although we all want to feel it we should wait about four weeks before we actually do.... I can picture Jake walking around saying , " Hey wanna feel my box." He also explained that Jake will be able to be more active than he has been. As a rule of thumb as long as he can talk while he is doing the activity, he can do it. NO burst of energy, though.
We were thinking we might go on a tour ride to see the cool historical things around but Jake is just too exhausted. He took a four hour nap after lunch.
The funny thing is, being a Florida girl, I never had the desire to visit Boston, but now, I'd like to come back, when everyone is healthy and see a show, and check out the historical sites. Jake thinks Boston is cool. He likes that you can walk to everything. I know we aren't up here for pleasure, but I beleive in making the most of the situation. I hate that he is too exhausted to experience this place.
I don't have to be such a meanie anymore, he is quickly adjusting to the lower sodium diet, and making good choices on his own. Because he can not eat anything after midnight, he wanted a "good" dinner. So we went to a restaurant close to the hotel called RockBottom. It was very good.
Everyone keeps asking how I am holding up. Every cloud has a silver lining... It stinks that Jake has to have surgery but honestly I am relieved. I know it sounds morbid. My little boy is having surgery, and I'm relieved. But right now if he does anything strenuous he could die, after tomorrow that is not going to be a concern. He may get shocked, but he won't die. So, today, I'm relieved . Tomorrow I will be on pins and needles, a nervous wreck. It won't be pretty. We have to be at the hospital at 9 a.m. where they will prep him for surgery. The surgery will take about 1 1/2 to 2 1/2 hours.