Monday, August 10, 2015

Who Needs Neutrophils?

Today we took Max down to Phoenix for his heart clinic appointment. We got some good news and some not so great news:

The Good News
His heart function not only looks great, it's actually improving. We've dealt with a little muscle stiffness in the past but that seems to be gone. The transplant director said that Max's heart function looks totally normal--yay!

Max has also gained some weight and he's up to 8.95kg (approx. 19.7 lbs). Just to give him an extra boost, we're going to try and get him some higher calorie formula so we can hopefully continue to fatten him up.

Max's blood pressure appears to have stabilized which means we can stop his blood pressure medication! That means we're down to just five daily medications (reminder: Max was on sixteen when he was first released from the hospital).

Max hasn't had a cold in almost a month despite the fact that we've been able to go out and do more things like normal-ish people!

The Not So Great News
The fact that Max hasn't gotten sick is somewhat of a miracle because not only are Max's white blood counts down from 5,500 to 4,600 (most people have an average of 7,000), his neutrophils (type of white blood cell that fights off bacterial infections) have dropped from the very critical level of 0.4 down to an almost non-existent 0.1. Both the transplant team and the hematologist said that's probably because we're so proactive about hand washing and sanitizing.

But seriously, this is why our kid isn't currently in the hospital.

So why are his neutrophils dropping? There are two likely causes we're investigating:

1. The increased dosage of his anti-rejection medication. We've had to bump up his dosage (boo!) because he's gaining weight (yay!) But this is kind of the balance of transplant--he needs enough of the med to keep the body from rejecting the new organ but not so much that he'll get sick if someone two towns over sneezes.

2. Max's body might have developed an autoimmune disorder and started producing antibodies to his neutrophils, essentially attacking itself. This can happen as a result of the anti-rejection med. We won't know for sure if this is what's happening until we go in next week for a blood test and then we'll have a better picture of what's going on.

What's Next?
For the time being, we're just kind of waiting. Because Max hasn't been getting sick despite the fact that his immune system has essentially peaced out, the hematologist isn't really anxious to make any big changes and he wants to see what Max's system does on its own.

Pictured: Max's immune system

Depending on what the antibody test says, there are a couple different medications we can try ranging from an oral medication to a shot we'd administer at home. On the bright side, the hematologist didn't seem overly concerned. He said they've had great success in boosting neutrophils in their cancer patients (who have their neutrophils wiped out by chemotherapy).

For the time being, we basically have to keep doing what we're doing in terms of our sanitation precautions. We already track his stats daily at home (heart rate, blood oxygen saturations, temperature, etc.) and we need to keep an extra close eye on his temperature. If his temperature gets to 101.5 or higher, Max will have to be hospitalized to get a blast of antibiotics to essentially replace his absent neutrophils.

Like this, but with less Keanu Reeves.
I mean, there will be some Keanu Reeves. Just less.

In the meantime, Max is just his usually happy self. He's making big improvements after only a couple weeks of restarting physical therapy so hopefully we'll have some great news to report soon. But in the meantime . . . please don't touch him. We don't miss living in the CVICU.

We prefer to love you from afar, PCH.

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