At a crossroads

This is strictly a medical update on Jacob. We are having some reserves with going forward with the surgery now which has certainly complicated things to the nth degree. I'm not quite sure where to begin because there is a lot of ground to cover in this post. I suppose the best place to start would be last Sunday when he was in my care for most of the day. He was stable most of the day but when he was unstable, it was quite serious. I thought I was going to lose him twice. I've talked a lot about how dehydrated he gets with the site being open and the binder that constricts his breathing. Combine both of those factors and you have yourself a breeding ground for plugs. That's exactly what happened to me on Sunday with him. The plugs were so thick that they blocked his airway off completely. Usually the cough-assist machine:  

and the suction machine:

are used to pull the plugs out. The problem Sunday was that they were too thick for the machines to pull out. I knew I was on borrowed time because he wasn't moving, his eyes were starting to close and he had no airway. I'm going to say that by a miracle of God alternating between the two machines and lavaging (figure 3), I was able to get the plug out of his trac. They still did not pull it out into the tube like usual but the suction had enough power to suck the plug at the tip of the tube; just enough for me to get it out of his trac and clear his airway. It happened twice to me and it's becoming a regular occurrence as long as he is in that binder. Though, we cannot remove the binder because that is what gives us minimal leakage on his skin from the gastric secretions. If we were to take the binder off (we have tried under direction from the doctors) the secretions will leak on to his skin and burn through several layers of his skin.

The set back with surgery is evidently the problem with the surgeons; as they have different opinions. However, I didn't mention that Jacob cannot have narcotics. Since he is a spinal cord injury, narcotics can be fatal to him. I can explain the physiology behind that in another post. So I ask you to consider his options; this surgery will cause him so much pain that he won't breathe on his own. Then you have to factor in the fact that he cannot have narcotics to relax him from all of the pain and anxiety. Doctors are weighing out the pros and cons as we are. Is it worth it to put this little boy through so much pain and not be able to do anything but wait until he recovers *if* he recovers? The pain can be so bad that it will spike his heart rate, temperature, and lower his oxygen sats. Or, is it a possibility for it to heal on its own? Science has recently come out with a brand new feeding tube similar to Jacob's current one. They are so new that they made one especially for Jacob because they weren't available to surgeons yet. However, after things got bad we opted out of the new tube until he settled down. So with all said, we are at a crossroads. Pain can have a negative affect on the body, possibly worse than this "healing" site is having on him right now. I have less than a month left at home until I go back to school and it doesn't seem as though this surgery will be happening before then, if at all.