Archive for category: ht

Over the years, as folks have learned about Heath’s heart transplant story, we have often seen them shake their head, maybe even tear up a little bit and say something like, “I don’t know how you’ve done this, how he has done this.” Or “How are you still standing?” Or “You are so strong.  I don’t think I could do it as a parent.”  I often respond with, “well–you just DO it.  You figure it out.”

The truth is this–some days none of us know how to do anything except put one foot in front of the other.  Sometimes we can see the plan laid out in front of us and goodness it looks awesome.  Sometimes we’re not sure if we will make it to the next moment.  But we keep going–whether with a yell or a whimper, kicking and screaming or skipping and laughing–we keep on.

Recovery from anything is not usually a quick and easy process.  Heath is doing remarkably well (providers are amazed with the ways he is participating in his care, listening, learning, recovering), but even the most remarkable recovery takes time.  Throw in super-low white blood cell counts (from chemo) and major emergent GI surgery with an ostomy, oh, and keeping your transplanted heart in good shape with the correct levels of immune-suppressants, and we’re learning to just take each day as it comes. 

On my “medical words I wish I didn’t have to know” list this week, we add the word, NEUTROPENIC, which means that you have an abnormally low count of a specific kind of white blood cell–neutrophils–that can leave way for high fevers and infections.  This is where you expect to be with chemo, but a word you don’t really want to live or learn.  It is also what will keep us here at Duke–IV antibiotics are a good thing for neutropenic people, especially those who have just had surgery.

We’ve struggled to figure out how to update everyone because it seems that we think we have one part of the answer and it changes the next day. In these days we are working on rest, recovery, weight gain, PT, and even a little schoolwork.

We’re learning to find some happiness in eating french toast and pizza (!!), throwback Gatorade cans that showed up in the PICU and on our unit (see pic), PT students who add college teams to Heath’s plan and remember what he likes, nurses who want to have him each day and wear silly hats and bring football pillowcases and talk about regular life stuff, and house-keeping staff who strike up hilarious conversations with patients while taking out the trash.  All those things.

At some point in the next week or so, we’ll hopefully head home for a little mental/physical breather before we start the next round of chemo.  The planner in me desperately wants to tell you exactly WHEN.  But the part of me that needs to remember that we are in a “one foot in front of the other” season knows that I should not speculate on such things too much.

When I was talking with Ron (Shive, my dear friend and colleague at FPC) yesterday, he was telling me that he had been asked in a retreat ice-breaker this question:  What would the title of your autobiography be?  I don’t know, but it certainly is a question worth pondering.  What would yours be?

For me, maybe for Heath’s biography (he has teasingly told me that he releases the rights for us to write a book about this experience), right now it must be this–“We Can Do Hard Things.”

We can, friends, we can do hard things.  It doesn’t mean that we’ll do it with a ridiculous smile or goodness knows, not in a “God doesn’t give us anything we can’t handle” kind of way (by the way, that is not my brand of theology), but in a step by step, find grace and good and humor and tears and anger all mixed up together, kind of way.

This is the sermon/pep talk I give myself late at night when the monitors beep in the hospital or I am trying to figure out how to help bring some “normalcy” to our other precious kiddos or train our very bad puppy so she doesn’t eat the antique couch…we can do hard things.

“Throwback Thursday” hit us in a pretty unfortunate way yesterday, in the form of Rapid Response and our old “friend” PICU Room 1.

Overnight Wednesday into Thursday, Heath had become increasingly uncomfortable in his belly, which was getting bigger. By the time I arrived Thursday morning, the first NG (nose) tube had been placed to try to drain some of whatever was building in his belly. Chris said he had seen so many people prior to 6am.  With an x-ray they learned that there might be some reason to believe Heath had a bowel perforation (which they had been worried about the whole time with tumor placement) AND that the NG tube had “coiled” and needed to be removed and put back in.

Turns out the second attempt went into his airway and he got even sicker and all the numbers went wonky. That landed us a move to the PICU. When we heard “Room 1” Chris and I looked at each other with a couple tears—that was the room where we had spent so many days on ECMO, waiting for a heart. (For those of your newer to Heath’s story—he had a heart transplant in Dec. 2008. It’s a pretty dramatic tale.) But that was the only space available (um, folks, remember that all our hospitals are full!) 

Finally, we were able to get him to a CT scan. Surgery had been “holding” an OR, just in case. The surgeon came quickly to tell us that a section of bowel had pneumatosis and they needed to take him to surgery. So our newest addition to the “medical word we wish we didn’t need to know” list is pneumatosis—the presence of gas in the wall of the small or large intestine. The “silver lining” was that the tumor was considerably smaller, so chemo was definitely working. They weren’t sure exactly what they would find, so we had to be prepared for multiple outcomes with the surgery.

The surgery took several hours. Dr. Tracy said that it went well and they ended up resecting (taking out) a small section of bowel—and the tumor (!) Due to where his body is with chemo and healing prospects, it was determined that they would leave a small, temporary ostomy that they would go back and repair in a few weeks. Basically the tumor had grown into the bowel wall and when it shrunk quickly (oh, obliteration has some consequences), it left a little “hole” so it is really good that they got in there. While this may sound awful—it is also a good outcome.  (Dr. Tracy is awesome, by the way.)

Last night, they kept him sedated and on a breathing tube just to give some extra healing time. He actually woke up a little and responded to the nurse’s questions snd squeezed my hand, which she said was “amazing.” This morning he motioned for his phone and texted some questions—something that also amazed the nurses and surgical team (like, “When can this annoying tube come out?” ) I imagine they’ll extubate at some point in the near future and that we’ll remain in the PICU for a few more days, probably in the hospital a bit longer than that, but that is mostly speculation on my part. And obviously,  Heath will need to continue with chemo treatment because there is no way to know if they got it all, but we’re all pretty darn glad to get that damn tumor out. I know he will be when he wakes up! They were able to move us to a different PICU room—to make new memories…

It was a rough, really awful day, no doubt. But the “throwback” part of the amazing people we have gotten to know through our 13 years here was a glimpse of grace. There was great comfort in seeing faces that we long-remember as part of the team who saved Heath’s life all those years ago. Hugs from dear folks I spent good time with as I served on PICU parent advisory council and the Duke Children’s PFAC. Sitting in the OR waiting area with our wonderful heart transplant nurse practitioners checking on us, having a dear surgeon friend see us and stop and talk on his way home. I wish we/Heath didn’t have to be so “known,” but we also recognize what a gift these long relationships have been. I’d just rather run into them at Target instead of the PICU.

The roller coaster keeps on going. We keep on going, with incredible gratitude for world-class medical teams who care so much about what they are doing and the children and families they are treating.