The bumpy road continues….

…yesterday another ultrasound was done to determine what the fluid pocket did as far as reducing it since the tubes were placed. Well, nothing ever goes as smooth as you hope, because they found that the portal veine (??) was clodded. They can’t do surgery on it, and said that this can happen from time to time. If it causes problems later on down the road, it means he may need another liver transplant but we should not concern ourselves with it too much. Generally, patients are placed on heprin (which he is on right now) for about 6 months, but the transplant team is going to contact the blood specialists to see if this is alright for a five year old.

Over all everyone is very pleased with the progress and make a big deal about how good he looks. My biggest thing is, that he is WARM!!!! Something unreal to me as he always was a bit colder to the touch than the norm.

He is also not eating and drinking as well, which btw could be part of the clodding issue. And when he does drink, it is water, which they don’t want him to have too much of. But that is what he likes, plain ol’ water.

And our journey continues…

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2 thoughts on “The bumpy road continues….

  1. It must be so discouraging and distressing when you hear that there is still something not quite right. Even though this might not end up being a problem you are always left wondering … and that is an awful feeling to always have to deal with. I feel for you.Funny how he would be warmer to touch. Would a better liver function help with blood flow as well and therefore add better circulation and more warmth … just a thought off the top of my head. It must be discouraging that he doesn’t want to eat … but I suppose realistically he had just come through two very major surgeries and it could just be a matter of time. I imagine the body has to do some pretty major adjusting … recovering and adjusting to a new way of fuctioning. Did Lennon have a food aversion before or was he a pretty good eater? Why do they not want him to drink water? isn’t that the best hydration around.I hope that the road begins to smooth out soon.

  2. Yes, I am also wondering why they don’t want him to have water, or a lot of it. I’m sure that it’s just a matter of time before things flow more smoothly. If I write more, I will just be echoing more of what was said already, but just know what I’m thinking about you and your family and praying, too.

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