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.
Wow…good news and yet such challenges for Heath and all of you. I couldn’t hold back the tears from this posting. You are all fighters and such an awesome family.
Heath is a superstar! And he has a pretty amazing supporting cast, including mom and dad. These posts read like a book you can’t put down, cheering, crying and praying for every person involved in this epic journey. Especially Heath. That empty waiting room pic says so much. There is a community of saints in there with you! Three cheers for tumor obliteration!
Oh, the twists and turn that your Heath and entire family had this week. Thrilled to learn that they were able to remove the tumor. Sending all our love and many prayers and Heath continues his chemo. Holding all of you.
Praying in our daily prayers for God to hold Heath and you close during these exhausting times. Love to all from some Black Mtn. folks.
We are so glad Heath’s tumor has been removed and that he and you are in kind, caring, skilled hands and minds at Duke!! Our hearts and prayers are with all of you throughout this difficult journey ❤️
YOUR REPORTS CONTINUE TO LET US FEEL CLOSE TO YOU AND CONTINUE TO BRING PRAYERS FOR YOUR STRENGTH AND FOR GOD’S HEALING HAND. WHAT PROGRESS TO HAVE THE TUMOR GONE!! MAY YOUR ENTIRE FAMILY FACE TOMORROW WITH RENEWED HOPE.
Twice now my attempts to comment seem to have gone up in smoke? Be that as it may, I rejoice that Heath’s tumor has been removed! And I hope that this event will mark the beginning of solid improvement in his well-being and y’all’s(!) in the days, weeks and months ahead. Sending much love,
Nancye
Hello, dear Nancye. What is the website doing when it doesn’t take your comment? Does it give an error, or does it look like it takes the comment but it doesn’t post? I’ll try to help figure out what’s going on. — Shelley Bainter
Sending so much love!
Whew, I am imagining you all with your hair blown back, your hands sweating, your face marked with the screams from this roller coaster. Mostly, I am thanking God for all the ways that in this ride you are reminded that you are not alone. May each encounter place a marker in your heart of when you noted that God is with you, that through all our prayers you are not alone. God bless your mighty son Heath, his courage and tenacity, and give him rest and healing for the rest of his treatment. God bless that huge medical teams through whom God has been working on behalf of your son and others for so many years. God bless you, your whole family, all those who love you and walk through this will you. Truly, you are not alone. You even have a prayer from Texas!
My name may occasionally show up as Mitty. I hit the M key a lot by accident on my phone instead of the K
Oh. Oh. Oh. This just came thru in our email as we have been traveling all day in rural Maine. I am SO grateful they took out that dang tumor but so sorry for all that Heath’s body, mind and soul are going thru. Love and prayers for each of you.
Prayers continue. Tears as I read this post. Heath is a trooper and is held in God’s loving, protecting, healing hands. ❤️❤️❤️
Dear Chris and Carrie,
This is unreal. Parenting is tough under normal circumstances and reading this made me wish I could hug both of you so tight!! You guys are caring for your family in remarkable ways, so please let us care for you. We are praying daily for your family and sending our love.
“Obliterate” may well be at the top of a list of the most beautiful words I’ve ever heard. You Tuttles are magnificent–so precious and so full of love and grace. Allowing us to share your difficult journey. is a gift from God. Thank you… with an overflowing heart.
Woof. What a ride. 🙏🏻🙏🏻🙏🏻
Wow and wow! What troopers all of you are for each other! God works in many different ways and all the prayers that everyone is sending are at work. Hugs to all!
Love ya
Susan’s and Keith
Obliteration AND Grace?! You are riding those big waves with the help of so many dedicated medical people who know you and care so much about Heath. I hope he can get the tube out and be more comfortable and surely not having the tumor and all that fluid now will make him feel better. I know he’s healing every minute with all that love surrounding him. Tears are good: healing, detoxing, just good for you. Love you all and thanks for sharing, Terry
Pretty sure I’m not the only one who already had tears streaming before I got to “the tumor is out” – praying without ceasing, for Heath and everyone. Peace be with you. Truly.
You guys are in our thoughts and prayers every day. Tumor is OUT. God is good.
What a journey! Tumor is obliterated! May the coming days be “uneventful”!
Wow wow wow…what a day! So grateful for the outcome and hopeful that the worst is behind you! Heath sure sounds like a trooper!! Continued love and prayers for the journey ahead🙏🏻❤️
So many memories! Our word was “innaception” (may not be spelled correctly!) when Johnsey’s lymphoma appeared! So happy tumor is gone! Give each other hugs and we will continue to bless you with lots of positive thoughts and prayers!
Love.y’all.so.much.
The tumor is OUT.
Challenges continue, yes.
What a rocky day.
The tumor is OUT.
Prayers continue. Sending love and healing mercies.
Love and prayers as we head to the healing waters of montreat. Wish we could pack you all up and take you with us.⛰
Love and hugs
I don’t personally know your family but I follow you through Pen Perry. My husband had an NG tube and it was the worst experience of his life.I can’t imagine all the trauma your son has been through. I will pray that Heath can get out of the hospital very soon. He is beyond brave and resilient. God is Good.
Rejoicing at the good news, praying for all of you as this journey continues. Amazed at Heath’s resilience this morning and texting his questions🙏🏻🙏🏻🙏🏻
Love prayers and supportive tears for you.. Thank you for writing and know how hard this is❤️❤️❤️❤️
Wow, what a whirlwind couple of days. I’m so sorry. But I SO APPRECIATE the detailed summary of events, which really gives all of us a good look into what you’re dealing with medically, and what you’re going through. I can see that silver lining of those hospital staff relationships — so valuable in times like these. Being surrounded by so much love, when your loving family and friends from outside the hospital can’t be there to hug you. How wonderful that you have folks who’ve known you through the entire journey. Please know the “outside the hospital” friends and family are thinking about y’all, praying for all of you, and cheering for great outcomes. I hope the next few days bring great improvement for Heath, and therefore, for all of you. ❤️
Indeed God is holding your hand and keeping Heath close to Him! We are so grateful for a loving knowledgeable staff, but how could anyone not love you, Heath and Chris! Thank you for keeping us informed, I know it takes a lot of energy, but we are so grateful.
God continue to bless you. We send love and prayers.
Carrie and Chris. I just don’t have words!! I am praying for rest and peace for the two of you. I am praying that this is as hard as it gets for Heath. God has something special for that young boy! What an example you, as parents, have set. Thank you for allowing me to follow Hearh’s story. It is a privilege to pray for all of you.
Sending big love with tears in my eyes!
❤️❤️❤️❤️❤️
Just a thought – As traumatic as room 1 was, it was also the place from which his life was saved, as you mentioned. Prayers continue for Heatth and you all.
Lots of love and prayers and hugs to all of you. Sending prayers for all the medical team that we are so thankful for.
Where there is great love, there are Miracles! Love and prayers.
Karen and Colie Smith
Thank you for all the updates. I can only imagine how taxing everything is on each of you at this point. Your positive spirit and faith is humbling and it is such a great reminder of what is possible with God’s strength. We are praying along with you and are thrilled to hear that the tumor (or at least most of it) was removed in this latest event and that the plan clearly working. Positive steps forward.
Hugs to all of you! Love the Masinicks
I hate that this happened, but so glad they got the tumor out! He is so strong, and so is your entire family. Continued prayers and healing vibes heading your way.
I am exhausted for you. I wish we could give you sleep and perfect health along with plebeian things like food. So for now prayers, even my less than perfect prayers, will be what we can offer with food.
We are most thankful that you live here with the most excellent Duke Hospital and all the wonderful healers there.
Hopefully this emergency operation and it’s silver lining of getting rid of that tumor will be quickly in your rearview mirror as Heath kicks that cancer’s ass!
Sending love to you all
So much stress, so fast! Grateful for some positive news in the midst of all that is so hard. Marla and I send love to you all.
Yes. I well remember those days
(ECMO and all) waiting and hoping and praying for baby Heath. It was one day at a time….
I’m so thankful Heath’s medical team is so awesome and treating him with such tender care.
Know you are in my thoughts and prayers and
(I’m sending you Starbucks)….
Hugs
Bonnie
What a trooper! Go Heath! I cannot even begin to imagine how exhausted you all must be, but we’re thrilled to hear that you are in such good hands. Many thoughts and prayers and positive vibes headed your way. Thinking of you!
Love and prayers from Papa.
Sending healing prayers for Heath and prayers for clarity of mind for your medical team. I know you all are working hard to support Heath. You are not alone in this journey. Sending love.
What a rollercoaster! We keep you in our prayers and are thankful they were able to get to that tumor even in these scary circumstances. Know you are being held up by so many! Blessings, i and m