Sunday, January 5, 2014

Transplant Day +26

The last few days have been rough for Luke. Medically there is a lot going on. Doctors believe his liver and kidney have at least stabilized as bilirubin and creatinine have stopped going up or have come down a little and his weight did not increase overnight which is a sign he is not accumulating liquids. Still has fluids in his abdomen that are making him uncomfortable. They did remove additional fluid last night, but doctor only wants to do that if absolutely needed due to the risk of infection using the catheter. For the past 36 hours temperature has stayed below 100.

As a whole the situation is a balancing act.  He is getting platelets and blood (hemoglobin @ 7.5 vs +14 normal; platelets at 19 vs +140 normal). Other than blood and platelets his water intake is limited to 1 liter a day to keep fluid buildup down. He is getting medications to get is veins to absorb fluids and to increase a liver enzyme believed to help dissolve the clots in the small vessels.

Luke is scheduled for the liver biopsy tomorrow. MDA is getting the approvals in place to have him transferred to Methodist if the decision is for him to get the liver med that FDA approved for clinical trial. The MDA transplant patient review committee is probably going to review Luke’s case tomorrow morning to decide on moving to Methodist. During rounds today the doctor did not think they would want to ship him over to Methodist under the care of a new transplant group provided liver and kidney function don’t get any worse.

Skin is still rashy. They did a biopsy of the skin on his thigh. Biopsy came back as GTHD which is considered positive as it is a sign his white cells are attacking foreign cells – just do not what it to get worse. Luke is still having a lot of pain and just can’t get comfortable. He did sit up in a chair today. Yesterday he was heavily sedated to the point of being a bit incoherent at times – yes Luke Beth did have Japanese Sushi. They cut back on the pain meds and we’re keeping the shades up and light on during the day so he knows it’s daytime.

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