Thursday, August 21, 2014

Six Month Biopsy and Results

On Tuesday morning, we all got up in the very small hours of the morning and hauled ourselves down to the hospital for Max's biopsy and heart catheter. Luckily, the exhaustion kept some of my nerves under control because I hate having to take Max in for procedures. I'm always worried about what's going to happen when he's in there but I also hate having Max taken away from me. It's always for an important medical reason, but it doesn't make it any easier. When he was born, he was immediately taken away to the NICU. That same day, he was taken away to be transferred to PCH. A few days later, he was taken away for his transplant. When he was five weeks old, he was taken away for his first biopsy. It's just hard to have to hand my baby to someone else and have him removed from me. Even though I knew it was coming, I teared up when I had to hand him to the surgical nurse. That's one of the worst feelings.

Fortunately, the procedure didn't take very long and our transplant cardiologist came out to talk to us, flashing us an "everything's okay" sign from across the room (we LOVE that he does that). The first thing he said when we reached the consultation room was, "Max is a rockstar," and he told us that everything went well. He said that if he had to be nitpicky, the pressures in Max's heart are higher than they were at his last biopsy but they're still in the normal range, they're just high normal. 

Shortly after that, the anesthesiologist (who happened to be the same anesthesiologist from Max's transplant) came and got us and told us Max was in his recovery room and awake. When we got in, the poor guy was coming out of anesthesia and he was clearly in hell. He screamed for about 45 minutes but as the anesthesia wore off, we were finally able to calm him down. Max then got an EKG and an echo from one of our favorite echo techs who told us that when the techs all saw him on the schedule, they all fought over who got to give Max his echo. Mighty Max is quite popular. 

We had to hang out for a few hours to make sure Max didn't have any adverse reactions to the anesthesia and then we got to take him home. The rest of the day was spent resting and taking naps--for all of us. 

Jon and I were each running on about one hour of sleep.

Our transplant cardiologist expected the results of the biopsy to arrive around noon on Wednesday so we spent the day waiting and anxiously staring at my phone. At one point in the middle of the afternoon, I checked in with our coordinator who told us that the results weren't back yet. Then we remembered that the lab is notoriously slow and we resigned ourselves to waiting for another day.

Except Christmas could either be great news
or horrible news resulting in the need for another transplant.

This is also relevant.

I finally got the call this morning from our transplant coordinator with Max's biopsy results. The short answer is that Max is okay, but it's more complicated than that.

Of course it is.

As I've said before, there are two types of organ rejection, nicknamed dumb cell and smart cell. Our transplant cardiologist was worried we'd see some dumb cell because Max has been off one of his anti-rejection meds (CellCept) and that worry was amplified with Max's blood work at the biopsy when we saw Max had outgrown his current dose of the anti-rejection med he's still on (Tacro) and we had to double it. When our transplant coordinator called me today, she said that they found very mild signs of both dumb and smart cell rejection.

She said that they started using a new grading scale for rejection that is much more severe. On the old scale, Max would have been completely negative for both types of rejection but on this new one, he's registering for a little bit. They're experiencing that with one of their other transplant kids who was totally negative but is now reading a little mild rejection of both types with the new scale. 

So what does this mean for us now? Honestly, we're not changing much. We're upping his dosage of Tacro but as of today, there hasn't been any talk of reintroducing CellCept yet. That isn't to say we won't in the future though--we're still dealing with low blood counts since they dropped back down after his infection. But they're higher than they were initially so we're still on a slow increase. 


Our plan at the moment is to just keep doing what we're doing. We're upping his Tacro, we'll keep monitoring his heart function at monthly clinic visits (as of right now it's still great), and we'll keep watching for signs of rejection--basically what we've been doing this whole time. 

We can schedule his six month well baby visit with the pediatrician to get his vaccines started which is nice and then we can start moving forward with our lives. Even with these mild signs of rejection, we won't need to do another biopsy before he's a year old unless something drastic happens which is great--I hate taking him and having to have him put under anesthesia. 

So that's where we are! All in all, it's good news. My heart stopped a little when our coordinator first told me they found mild signs of both types of rejection but put into perspective with the new scale, these are pretty good biopsy results.

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