Jaxon has officially completed his first year of middle school. He has visited family in Arkansas and is getting ready for a surgery here in July. Here is the update from Jaxon’s mom Amanda.
Jaxon health update:
On 7/5 Jaxon will be having a meso Rex shunt placed. They will use a vein from his body (most likely one of his jugular veins) to redirect the way his blood flows through his liver to make it flow through correctly.
The goal is to decrease his portal hypertension which is the thing that is causing him so many problems right now. If his portal hypertension decreases, it should then decrease the size of his spleen which is 19CM right now (for reference, the average adult males spleen is around 12CM). It should also make his platelets and white blood cell count go up. Both are very, very low right now.
If the surgery does what it’s supposed to do it could put off transplant for a long time. This is more than we could have ever dreamed of and didn’t even know it was a possibility a year ago!
It is an 8-10hr surgery. He will be in ICU at Lurie’s for around 3 days and then in a regular hospital room for another 5 days give or take after that.
Jaxon is excited. He hopes that he won’t have to have the transplant for a long time and is hopeful that some of the restrictions that are in place will go away once his spleen goes down to a normal size.
Right now, I feel at peace, like it’s the right thing to do, but making these types of healthcare decisions for some else isn’t always easy. I hope that we are making the right call putting him through a major surgery when he will need another for transplant at some point. Not sure how I will feel once the surgery date gets closer.
We are optimists at heart though so we are all hopeful!
