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.

Friday, August 8, 2014

6 Months Post-Transplant: The Other Side of Organ Donation

I've been wanting to do a blog post about this for a couple weeks now and I suppose that today, six months post-transplant, is as good of a time as any. Two weeks ago, Jon and I received a letter from Max's heart donor's family via PCH. We knew it was always a possibility to hear from them and we most likely wouldn't hear from them for six months, if ever. But in our daily lives, it's easy to navel gaze and forget to think about anyone outside of the three of us, especially when we're on house arrest and really only spend time with each other.

Receiving that letter was a much more emotional experience than we expected it to be. Out of respect for the donor family and for our own family's privacy, we have elected not to share the contents of the letter or any information about the donor. We will say, however, that they seem like nice, loving people. For me, this sort of feels like a double-edged sword: on the one hand, it makes me feel good to know that Max's heart came from nice people but on the other hand, it feels that much more tragic that a nice family lost their baby so ours could live. But, that's the two-sided coin of heart donation: the death of one person gives life to another.

This family has given us something that we can never even hope to repay. As writers, Jon and I love words but I find that even as I write this, all the words I have at my disposal are inadequate to express all the emotions I felt and still feel about Max's heart transplant. I'm devastated that they had to experience the death of their child. I'm grateful that this family elected to donate their child's heart in the wake of their tragedy. I'm joyful that Max received a heart and that, six months later, we spent our day playing, laughing, and taking pictures with him. All of these emotions are intertwined and inextricable from one another.

There's a certain level of survivor's guilt that comes from receiving an organ donation for our family, at least for me there is. It feels like one of those unanswerable questions: why did this family have to experience such a painful loss while our family got to keep Max?

On the day of Max's transplant, in the hours leading up to his surgery his kidneys started to fail and if they had, his other organs wouldn't have been far behind. The doctors might have been able to buy him some time but we were facing the very real possibility of losing our son that day. Even the smallest stimulation caused his numbers to drop drastically which meant that I wasn't allowed to even stand at my son's bedside because my presence was too much for him. Instead, I sat across the room and stared at the monitors, watching the numbers dip into the red warning zone, take one step up, and then sink down two more.

I was terrified that I was just watching my son die and I'd never even gotten to hold him. I hadn't even heard his voice yet.

Max's donor heart came through in the nick of time and, thanks to the strength of that heart, the incredible talent of his surgeon and the transplant team, and Max's fighting spirit, he made it through. More than just made it through, Max has thrived. Yes, he's had low blood counts and we just dealt with his first infection, but Max has exceeded the doctors' expectations.

We are so thankful for Max's donor and that child's family. They didn't just save Max's life, they saved Jon's and mine, too. We are immeasurably grateful to them every day for the gift they've given us.

If you're friends with me on Facebook, you've probably noticed that I share a lot of statuses from I encourage everyone, if you feel so inclined, to sign up to be an organ donor. It doesn't matter your age, ethnicity, or medical history--anyone can register as an organ donor and a donor can save up to eight lives. When we found out Max would need a heart transplant, Jon and I both registered as donors and we encourage others to do the same in honor of Max's donor.

Friday, August 1, 2014

A Feverish Update

After Jon posted the last blog update, we all got some much needed rest after such a long night and day of worry and a visit to the hospital.

Max and I napped for a couple hours and when we woke up, his forehead felt drastically cooler. We took his temperature and it was perfect: 98.6.  We've taken his temperature several times and each time it's been in the 98 range which is exactly where we want it. His mood has improved and he is back to his normal, happy self.

About an hour ago, we got the results back from his lab work. Regular readers of our blog know about our struggle with his white blood counts over the last few months. We've had to pause three medications and his numbers are generally in the mid 2,000s to low 3,000s (average is around 7,000 for normal people, we were aiming for 5,000). We got the results of his counts back and they're at . . .


I believe my exact reaction when she told me was, "HOLY CRAP!"

Our transplant coordinator said this is probably the result of three things:

1. The medications we paused have had more time to cycle out of his system which would allow for more production of white blood cells.

2. Max let us feel his gums with a (gloved) finger last night and we felt the start of a tooth breaking through on the upper left. Since the body reads a tooth breaking through as an "injury," it can cause a fever and an increase in white blood cells.

3. He's probably been fighting off a mild viral infection which caused his body to produce more white blood cells.

This is a really good sign that his body is able to produce the white blood cells in order to fight off an infection--although how the hell he got an infection is beyond us. We live in a Lysol can.

This also means that we don't have to check him into the hospital to provide him with an immune system, his is doing its job. This is a double edged sword though because his counts are currently higher to deal with this infection but now we're just hoping that once the infection is gone, those white blood cells don't look at his heart and go, "Wait a minute . . . you're different . . . I should probably bounce you from this body."

So where are we at now?

We're still very much on lockdown. Our transplant coordinator warned us that we're not out of the woods just because his fever broke. That fever, even if it's no longer an active symptom, can be just the warning sign of other symptoms that might show up while this viral infection runs its course. We're going to have to continue to closely monitor Max and if anything arises, we'll be back on the phone with the transplant team to do this all over again.

His blood counts are up but we have to be aware because higher counts equal a greater chance of rejection. Plus, he's still very susceptible to the infections that his paused medications help prevent. Now that his counts are up, we'll most likely be able to start them again (probably after his biopsy later this month) but that could make his counts plummet again. It's like riding a not very fun seesaw.

It's okay, Keanu. We understand.

To summarize . . . our immediate situation is better because the fever has broken but we have to watch him closely while this infection works its way out of his system. Our house arrest is also going to continue for three reasons:

1. He's still fighting off whatever mutant, freakish thing he manage to contract despite our Purell baths.

2. We don't know how long this huge spike in blood counts is going to last and we don't want to risk exposing him to anything else, especially so close to the biopsy.

3. He hasn't been able to get any of his vaccines yet but that will change after his biopsy.

Long term, we need to keep an eye out for further symptoms and hope we don't see anything indicative of rejection. We'll get answers about rejection after his biopsy later this month so fingers crossed for now.

It's an uphill journey but we're taking baby steps towards progress!

If you recognize this movie, we're obviously meant to be friends.