Lennon went back on the breathing tube for a pick-line, ct scan and possible upcoming procedures. I was quite upset over this because I feel that the longer he is on the breathing tube, the more he will struggle and take to recover. On the other hand, he is probably the most comfortable now. His heart rate is back to normal 112 as opposed to 163. He clearly was struggling to breath with all the fluid on him.
In the mean time, we had a reality conversation with one of the docs. The PICU is extremely worried and the reality of the matter is that he may not make it. Why? Because they don’t know where all this fluid is coming from, why his body is doing what it is doing. Is it the leak in his bile duct? Is it the fact that his portal vein is not full functioning? Or is it something else that they are just not seeing? I am currently still waiting on Transplant to tell me about the CT-Scan and what they are going to do about getting him better.
I have to belief that he will walk out of here. He has fought for 5.5 years, why on earth would he quit now. Why would anyone put him through all of this and then let go? Death is not acceptable to me at this point. Which is a difficult balance because there is that reality factor mixing with hope, perhaps some false beliefs. But I have to be positive, there is no other choice.
As I am writing this, transplant came in. What happened in this past week is as followed:
His portal vein is completely clotted and another vein, the name escapes me, is partially clotted. So now comes the point for the docs: How do we fix it!?!?!?!?!?!?
They are not sure, some procedures that would be nice don’t seem plausable, others might be too risky at this point. In addition to that they have to replace the chest tube since it broke and one of the PICU docs had to “McGyver” it. This should happen today and then the plan is to get him of the breathing tube. The hope his that it will help with the fluid reduction, though there has not been new fluid pocktes or anything else new in that matter. But you only going to get so much fluid out with a not-as-sealed-chest tube.
Now they are trying to figure out how to fix the portal vein. What kind of procedure seems possible, is a good idea, what wouldn’t work etc.
I’ll guess I’ll be on pins on needles until then.