Medical update

From Jaxon’s mom:

We met with Jaxon’s new liver doctor at Lurie’s earlier this week. We really liked her! We also met with one of her fellows (and soon to be faculty member) who’s area of interest and research is Jaxon’s liver condition, which was AMAZING! Having a rare condition means there isn’t much research being done and having an even rarer condition that’s part of a rare condition means there’s even less research out there. 

We don’t have the results from his labs and tests back yet. One thing we are learning us that they aren’t very quick there hehe

The new doctor brought us some new information that we were not expecting. She thought that Jaxon may be a candidate for a surgery that, if successful, would put off transplant for quite awhile. They would be placing a meso rex shunt. The shunt would restore blood flow to the liver and decrease his portal hypertension which is what is causing all of his problems. It would allow his spleen to shrink down to a normal size and increase his platelets and white blood cells. 

It’s still a major surgery that would require an 8-10 day hospitalization afterwards. There are still some complications that could happen during surgery and some complications that the surgery could cause afterwards. Still, the idea of him not having to be on immunosuppressant medications or worrying about a transplanted organ rejecting for quite awhile is nothing short of amazing to think about. 

We will be meeting with the surgeon in the next few weeks before making our decision. He has performed over 200 of these operations and it sounds like people from all over the country come to see him. 

Needless to say, we have alot to think about! This isn’t a small decision to make.

 

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