Heath loves team sports: baseball, basketball, football, you name it. The Tuttle family cherishes the support of a large team of family and friends in the good, fun times and in the hard times.
This site is to keep the beloved members of this team informed about the latest with our favorite all-star.
Saturday, September 25 – Back with our friends on 5200
A quick note at the end of a gorgeous Saturday to let you know that Heath is OUT OF THE PICU! We moved back with our old friends on 5200 about 6pm.
This morning the ng tube came out and he was cleared to begin to drink clear liquids, at a gentle pace. The goal is to get his system slowly moving again. He’s had a gatorade and some apple juice and a few popsicles. We’re enjoying watching college football and are so relieved that he’s doing well enough to take this next step.
We anticipate the next few days will be slow, talking with oncology to figure out if this changes the chemo plan at all, and learning a lot about Heath’s new ostomy friend. But after a few weeks of juggling very many things, this scary episode has clarified things a bit. Our goal for the coming weeks is to heal. May it be so.
After we moved into the new room I went down to grab a cup of coffee and sat out by the front circle, just to take a breath and watch all of the coming and going. So many people, so many names and faces, staff and patients and families. The hospital is this strange parallel universe – so much life and death right in front of us, not far from neighborhoods and homes and cheering fans at college sporting events. For every Saturday evening dinner party there is someone waiting in the circle for a family member to take them home, a respiratory therapist starting a shift, hundreds of people of all ages and backgrounds in a bed or a chair, waiting.
Hope you all have had a good day, whatever it has brought you.
Friday, September 24 – Throwback Thursday
“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.
Wednesday, September 22 – Weary Wednesday
Timely updates are tough because things keep changing, hour by hour, sometimes even minute by minute (which is making me chuckle a little because anyone who has spent a lot of time in any hospital knows that it is almost always a “hurry up and wait” kind of place). Nevertheless, I know folks are anxious for an update and not wanting to bug us, so here is my version as of 12 noon on Wednesday.
Monday was a super rough day, but not completely due to response to chemo and next steps, but in anticipation of them. We were all feeling pretty anxious, and it manifested in Heath having some pretty significant pain (also due to mass, of course) and high blood pressure. So it took a while longer to get in a room and to get started with chemo because we needed to rule out other medical issues w/ gut pain. After 7 hours waiting for a kidney and belly ultrasound (long story), they decided to go ahead with first set of chemo meds and get the ultrasound the next morning when Heath would be NPO (for you folks who haven’t had to do much medical treatment, that just means no food or drink) anyway for his lumbar puncture chemo. The great news after a long day was that he tolerated the first chemo meds well through the night and his kidneys seemed to decide to start working they way they needed to.
Yesterday was busy and “hangry” day. Twice having to be transported around the hospital. Ultrasound, back to room to start next set of chemo meds, then to pre-op for lumbar puncture (luckily we learned that they will not all need to be with full anesthesia, just the one yesterday hopefully, which will make that part easier as we go on 🤦♀️). They didn’t start that procedure until almost 3. Again, “hurry up and wait.” He was soooo hungry. As he was in recovery, we learned that the ultrasound had come back with “unremarkable” look at his kidneys (I.e. they looked ok with nothing bad going on). I told Heath that his over-achieving parents would be super proud if all his parts could continue to be “unremarkable” during and after this treatment.
He’s had a lot going into that precious body of his—regular meds, chemo meds, anti-nausea and meds to combat the effects of all those meds—and we are celebrating that he is not as sick as we anticipated right now, but some of the other issues (kidneys, fluid, belly pain) are what we’re focusing on today. Chris and I switched about an hour ago and it sounds like Heath is perking up a bit (now that annoying mom is gone? Hee, hee). they started lasix to remove some fluid and will have another chemo infusion pretty soon. Hopefully the only moving around today will be a walk around the unit and he can settle in to some final chemo and getting all sorts of levels in the right spots for next steps. (And hopefully home in a few days.)
As I make my way to my bed for a little nap (ya’ll, we’re pretty darn exhausted. Weary. Truth.), my eyes just caught this bookmark, sent by some dear friends from First Pres. My comfort scripture—my favorite—many of my friends and parishioners have heard these words tumble from my lips as they go through their own sets of hardship over the years. the waters are feeling pretty darn high right now, I am not going to lie, but we know that we are as ok as we can be and are surrounded by love and excellent medical care.
Isaiah 43
But now thus says the Lord,
he who created you, O Jacob,
he who formed you, O Israel:
Do not fear, for I have redeemed you;
I have called you by name, you are mine.
2 When you pass through the waters, I will be with you;
and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
and the flame shall not consume you.
