Reality

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.

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3 thoughts on “Reality

  1. My heart aches for you and your family. It has almost been 8 weeks of emotional and physical ups and downs, and poor little Lennon’s body that is fighting and fighting all this time. We are praying for you – that you can all remain strong and especially Lennon can continue to be the fighter he is and hang on until the doctors can find a way to help him. We also pray that doctors are onto something by what they found out and in turn are able to find some way to aleivate the problems and put Lennon back on the road to recovery.As heartbreaking as it is to see him intubated again you are right that at least he can relax now, and maybe this will also give him a bit of an edge to strength himself in preperation for whatever the doctors decide.Keep thinking positive … and take care of yourself too

  2. Ive been thinking of little Lennon ever since the day I left…I dont have internet just yet but Ive been looking at the posts on my phone. Nothing has ever been easy with Lennon for whatever reason…just when we think hes making the turn he takes another loop. But he’s Lennon a special little boy with a special purpose…and thats why were all on Lennons time! I love and miss your family. I think and pray for you, Kevin and Lennon constantly. Make sure your getting Robbie Williams time too…My picture frame is showcased in my new house with a willow angel beside it! Constant thoughts…

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