Josiah has his trach and g-tube now. He is recovering fairly well, but he had a lot done today and seems to be in quite a bit of pain. He is so tolerant of his pain meds these days that normal dosages don't do much for him. This picture is of him when he was still paralyzed right after surgery.
These next two are after he woke up. It was amazing to see his entire face. I don't think anyone can understand what it meant to me to see his face with no tubes or tape anywhere. Josiah is 5 months and 5 days old, 162 days in total and this is the first time we have seen his beautiful face. I broke down sobbing when I got to see him. All that kept going through my head was, "Thank you God, Thank you God, Thank you God." He is beautiful.

Josiah is now paralyzed again (like in the first picture) because about 30 minutes after the 2nd pictures were taken you could tell he was in a lot of pain. Milo and I and an RT had to hold him down until they could get more medication for him. It was awful for us. He needs the increased dosages of Morphine and Ativan and the paralytic. I hate to see him without it, but I hate to see him get that many drugs. It's a no win situation. I think that watching him after surgery this time has been much more difficult for me because Josiah did not need to have these surgeries today to save his life. We kind of had a choice in the matter. Every surgery he's had so far he has needed to save his life, no options, so it's easier to endure. It's harder to watch him be in pain today knowing that had he not had this done today he'd be the same as he was yesterday and not in pain. I know that his surgeries today will improve the quality of his life so I'm trying to stay focused on that as I continue to gaze at his beautiful face.

Josiah is in surgery right now. He left about 7:15am. We don't get any updates this time so we will just patiently wait in the waiting room.

So tomorrow is the big day. Josiah will be having his trach put in and a G-tube placed. On top of those two things Josiah is going to have a couple other things as well. We are sending him in for a complete tune-up. He is going to have a stomach surgery called a Nissen as well. This is where they wrap part of the top of his stomach around itself (I think) and tighten up the area where the esophagus meets the stomach. This will help Josiah not to have as bad of reflux as he has. The hope is he will be able to keep his feeds down better and continue to grow. A good majority of heart babies have major reflux issues for some reason. We are being a little bit proactive with this one. There is the possibility that he may not need it but it is more likely that he will and we would have to bring him back later to have it done. So we are opting to do it now and prevent a future trip to the OR. This surgery can be done laproscopically so it wont be as invasive. They have to fill his abdomen with air to do this so the the surgeon can see what he is working on. Sometimes this air can cause pressure on the heart and so there is an increased risk with Josiah. If Josiah's heart shows sign of distress then they will pull the air out and do the surgery the old-fashioned way by cutting into his belly. We are obviously praying that there are no complications like this.

So over the past couple of days Milo and I have been learning a lot about the trach and trach care. Josiah will be getting his trach early this coming week. I think more than anything it's a huge emotional barrier to get over. It means we resign ourselves to the fact that Josiah can't breath on his own. That's really very difficult to admit. We knew going into all this that we would be bringing home a baby with "half a heart." We didn't expect to bring a baby home with "half a heart" breathing through a trach with a home ventilator and eating by way of a feeding pump. But we do get to bring him home! We've even for the first time have started making plans for that. Nothing is set in stone yet. Josiah still dictates the pace, but there is the possibility of taking him home 4 to 6 weeks after the trach is put in. Mind you that's the time frame we were given when all this started 5 months ago, so no promises!

I have had a busy couple of days in the PCICU with little time to update the blog. Nothing to busy with Josiah just a ton of consults with doctors from other departments. Josiah has just been resting on the ventilator the past couple of days. They have moved his feeds into his belly and that is our main focus right now so they have stopped CPAP trials for now. He is tolerating his feeds well. He is back up to full feeds now, which means 30cc (1 oz) per hour. The next step will be to compress 3 hours worth of feeds into 30 mins or so and then off for 2.5 hours, so that he is feeding like a "normal baby" (although through a feeding tube).

We had another discussion with the MD's yesterday which included a real conversation about the potential of Josiah needing a tracheostomy. That thought has been looming in the backs of our minds for a while now but yesterday was the first we've actually discussed it with the doctors. It appears that is the direction we are heading with this latest failed attempt at extubation. A tracheostomy is where they surgical insert a tube through Josiah's neck and into his trachea (wind pipe). This would remove the need for the tube in his mouth and throat. Basically it is a way for us to be able to bring Josiah home on the ventilator. There is a ton that goes into all this and at this point I don't have all my questions answered. There is good and bad that go with a tracheostomy. So we are in the process of finding out information and discerning our feelings through all this. I can't at this point even figure out my feelings for myself. At one point I am hopeful at the possibility of bringing Josiah home and then a moment later I am overwhelmed by the possibility of never hearing my sweet baby cry.