Journal entry by Sarah Schartner —
Happy New Year!
It has been a couple months since we've last shared a formal update, but as you know.... no news is good news! Time is precious, so we are spending every possible moment enjoying our time together as a family, especially during this holiday season.
Here are some updates since our last hospitalization in October:
October 11
This little buddy has hit a wall today... been sleeping almost nonstop, fussy, and just not himself. Fighting infections and being pumped with heavy antibiotics is very hard work. We’re also investigating if there’s any other underlying issues that may be causing some of the things we’ve seen today.
Looks like surgery will take place either Tuesday or Wednesday this week. With the timing of everything, they likely won’t place the PICC line and he’ll remain in the hospital for the duration of his antibiotic treatment. Earliest we’d likely bring him home is a week from today, next Sunday.
October 12
This little turkey goes in for surgery tomorrow morning at 7:30. For those wondering about the technicalities... he has portal vein stenosis which can be common in transplanted babies and is a narrowing of the vein that connects to his new liver, causing blood flow issues. Generally this is caused by built up scar tissue following transplant. The surgery will be completed by Interventional Radiology, which is less invasive and uses imaging to help guide them and provide treatment. They’ll be entering through the liver to get to the portal vein to perform a percutaneous transhepatic balloon angioplasty, in which they’ll be using a small balloon device to inflate and stretch/break the built up tissues on the vein. It may take attempts with various sizes, they’ll be checking blood flow pressures throughout, and may end up placing a stent as a last resort depending on complications. The procedure could take anywhere from 2-5 hours depending on their findings. We have the amazing Dr. Woods leading this surgery tomorrow (he performed the cholangiogram this spring when they were investigating possible diagnoses prior to transplant). We feel very confident and comfortable handing Calvin to his care.
He had a much better day today; perky and playful, napped peacefully. Here’s to a good night of sleep and making the most of his last overnight feeding before he’s cut off from milk to prepare for surgery.
October 13
Surgery was successful! Dr. Woods just met with me to go over the procedure and results, and it went very well overall. They were able to open the vein to nearly its full size and the flow showed very little resistance. The follow up imaging showed the blood flow all moving in the right direction (no longer branching off to other veins in the wrong direction due to pressure at the site). All great news!
Calvin will have a follow up ultrasound tomorrow, then we will continue having ultrasound follow ups to ensure we catch any narrowing/flow issues quickly in order to treat them again. He’ll remain sedated for a while to prevent too much movement or bleeding. He’s remained on a daily aspirin regimen since transplant, so they’re deciding as a team if he’ll need any further medications to help with blood flow/coagulation.
October 15 (see the photos included with this post to view the image of his vein)
Here is an image using contrast to show Calvin’s portal vein prior to the angioplasty. The vein flows from the bottom right corner of the image up to the center. You can see where there is a “waist” or narrowing where scar tissue built up where the surgeons connected Calvin’s portal vein to the vein of his new liver. It then widens and branches out as blood flows into the liver (the faint lines extending off from the larger dark blob).
The contrast liquid is injected so we can see where the blood is flowing. With the narrowing of the portal vein, it is similar to placing a thumb over the end of a running garden hose. The pressure changes, fluid rushes out faster (thus hitting the other side of the vein faster and widening/pushing that out) and also creating back flow. Not all the blood could flow as it should to Calvin’s liver, so it found new routes to make its way back to his heart through other veins off the portal vein.
You can see a few dark, wide veins branching off the portal vein just before the “waist”. That means the contrast was flowing with the blood in the wrong direction through those veins. The pressure build up too much in that spot, so blood found other routes through these other veins, bypassing his liver, and widening those veins, which could cause problems if left untreated.
With blood not filtering through the liver and finding alternate routes through the body, it lead to brewing up this nasty infection Calvin is currently fighting.
The angioplasty procedure was successful in that the surgeons were able to stretch and break that scar tissue to get the “waist” to nearly the size of the surrounding vein. There is some slight pressure still present, but it is drastically better and the blood is all flowing in the correct direction into his liver now. They will continue to regularly monitor this with ultrasound to make sure they catch future scar tissue buildup and any narrowing early in the process. The angioplasty can be repeated multiple times. We hope it won’t need to be done too many times and that this vein connection will grow with him as his body grows.
We are so thankful to our skilled medical teams that have been watching out for Calvin since day one. The abilities of modern medicine continue to amaze us! Our baby has a great shot at life and that is a blessing.
October 16
My heart is full...
Our Sauk Prairie community is one of the best. Life brought our family exactly where we were meant to be to go through this journey called life. The village we’ve found here is profound. My colleagues and friends in our school district have worked together to fill our emptying buckets with nourishment and support in so many ways. Meals, supplies, groceries, lawn mowing, messages of support.... it all helps lighten the load Christian and I have been carrying.
So many blessings... life itself is a blessing.
Yes, our son has been given a rough road in life, but he will never be alone. He has an army lifting him up that always shows up, through thick and thin. We love you all for that.
Thanks for following our story, for your heartfelt words, for your faith and encouragement, for learning more about livers than you’d ever planned to in life (haha).
Family is more than blood.
Family is what you make of it.
YOU are family... and we love you.
October 19
Calvin and Daddy made it back home late Saturday night.... never a dull moment, because as they were all loaded and ready to go, our van decided not to start! Thank goodness for amazing neighbors that are always willing to let Clayton hang out with them while Mom ran to Madison with jumper cables. A couple jumps and one new battery later, and we are back home!
Now that he’s line free, Calvin had his first bath in over six months last night. Mom stayed home from school today. We all needed time together to recharge and regroup as a family.
November 22
This little turkey is growing and changing SO FAST! He’s rolling and pivoting all over the living room, can sit unassisted for longer and longer stretches of time (hooray core strength!), gets himself up and rocking on all fours, and now we’re swapping his 18 month clothes with our bin of 24 month/2T. He has two bottom teeth working their way up and appears to be ready to show us his two top teeth any day now.
We’re looking forward to spending these upcoming holidays with our sweet boys. It’ll be the blink of an eye and the next two months will be over... and this nugget will be 1 year old!
December 6
• 10 Months Old •
Calvin has had a really good week! He wasn’t feeling well the week of thanksgiving and our concerns were growing. He spent a night at UW ER receiving IV fluids and a few days later, our suspicions were confirmed when his blood counts came back very low. A couple medication changes and a week to adjust, we now have our happy and energetic Cal back!
In fact, he’s been feeling so good, that he decided to start crawling this week! He’s been working so hard on building his strength and it’s all starting to come together with these new skills. (he is very motivated by his big brother) We’re still waiting for more teeth to make an appearance (he has two through on the bottom) because he’s drooling and chewing toys all the time. He’s working on his feeding skills. It’s been quite a process partly from not feeling well most of the time, having round the clock meds that are hard on his tummy, and because he likely associates us trying to feed him with giving meds. He’s slowly starting to realize that there’s yummy food on the spoon and will willingly eat for a few minutes.
We’re down to five oral meds and one injection to manage daily. (meds are still given 1-3 times each per day - so he takes about 10 oral doses of medication each day, all during specific time windows, injections occur twice each day)
I managed to store enough frozen allergy friendly milk to get Calvin to one year - and have officially allowed myself to break free of the dairy, soy and nut restriction I’ve been on since transplant. (just in time to enjoy all my favorite holiday foods on thanksgiving) My oversupply of milk production continues to be a challenge so I’m looking into other options to help reduce my supply (if you’ve struggled with this - I’m open to your advice and suggestions because medication to halt production is my next option).
We continue to be amazed by and forever grateful for Calvin’s life. It’s not the life we envisioned as we welcomed him into the world, but this journey has shaped our family in so many ways. We would live it all 1,000 times over if it meant he had this chance at life. He is our miracle that we’re blessed to share with you all... our village.
December 11 (remembering my dad - Calvin's grandpa - on his birthday)
Those last years were extremely hard for you, Dad. It was a heavy toll our family carried together. Seeing you struggle day in and day out broke our hearts. Little did we know, that this would be the last birthday we’d celebrate with you.
Your memory lives on through those that love and care about you... and your story has helped to change many lives. I’ve learned firsthand that some of the darkest days can hold the most beautiful silver linings.
Happy Birthday, Dad. This would’ve been your 60th year... I hope you’re celebrating somewhere, because I can just imagine the bash we would’ve had on the farm. While my heart has healed, I still miss you more than ever. You’ll always be my best friend.
• my friends... mental health isn’t just a fad or a buzz word - it’s real and important. And during this pandemic, it’s even more imperative that you’re checking in with yourself and others. Even though we hear the saying “we’re all in this together” - it is a time unlike any other where we’re also feeling alone and isolated. I can speak for myself as an educator trying to teach both in person and children at home, while being the mother to an energetic 3 year old and a medically fragile infant.... life is hard, taking life one day at a time still leads to burnout, I’m trying my best in all areas of life but feel as though I’m falling short. This is where we must reach out and lean on one another... thank God for the village that surrounds us and has help lift so many burdens. It is what has helped get us through. I worry for those that don’t have these supports. Please take care of yourselves and if you’re struggling, don’t be afraid to reach out to someone. You just may be surprised to find out how much love, compassion, and empathy lives in our world.
December 27
The Schartner Family got the best gift we could’ve asked for this Christmas... our family together under one roof! No trips or overnight stays at the hospital, no unsettling situations leaving us worried or on edge... heck, we managed to wean Calvin off another medication this week and today was his first full day with one less med to manage. Hoping for a great transplant appointment this next week to finish 2020 strong!
Christian and I talked about our shared thoughts that we wondered throughout the past year: What would the holidays look like? Would we be in the hospital again? How would we make it work if we had to be divided between home and hospital? Will Calvin remain healthy? So many things that weigh on your mind, especially during those long days and nights being admitted this year. When you try to think ahead, there’s always a tinge of worry and fear of the unknown. Thankfully, we didn’t have to navigate those situations and we’re enjoying some much needed down time at home.
December 29
This isn’t where we expected to be today, but it’s all about being flexible and doing what needs to be done.
Calvin had his routine transplant clinic appointment this morning at 9:30, followed by routine lab draws. We just made it back to Sauk when our phone rang. It was UW telling us to bring Calvin back. His blood counts were concerning so they wanted him brought back for a blood transfusion.
We checked in 1 1/2 hours ago and will be here at least another 4 hours. The bright side, we likely will not be admitted. The down side, I was hoping to be safe at home before this snowstorm started.
Calvin has had 5 hard pokes today, with another when we get home. If you struggle to find positives or silver linings these days, here is my reminder to be thankful for good health for yourself and/or children. If I didn’t have to soothe my screaming baby through one more poke, it won’t be soon enough. The reality is that this is our normal and will be for the rest of Calvin’s life.
Please pray for a smooth and uneventful transfusion, answers for why his blood values are dropping again, and for safe travels home.
January 2
Calvin has been full of energy since receiving the blood transfusion. He is like an entirely new baby again - crawling up a storm and is now determined to get up on his feet! (Clayton walked the week of his first birthday - and it appears that Calvin made up his mind to do the same) Within the past few days he has started pulling himself up to his knees, and just this morning, managed to pull up onto his feet in a standing position.
He's been started on a treatment regimen for anemia; we hope this will prevent the need for future blood transfusions. We have several appointments coming up in the following weeks, including another ultrasound to check on the blood flow in his portal vein.
The Schartner Family is looking forward to all that this new year has to offer - with all the uncertainty and trials of 2020, there were also so many blessings and beautiful moments that we will cherish forever. We know that this upcoming year will be a continuation of those wonderful things and more.
Please stay safe and healthy. Thanks for checking in on these updates!
Calvin is loved.
Calvin is resilient.
Calvin will do great things!
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Finishing up the observation period following the December blood ...
Calvin's portal vein prior to the October procedure.
Merry Christmas from Calvin!
Schartner Family - 2020
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