But wait…

Of course right after we publicly share the news of Beckham needing surgery, the plan changes. We had held onto that information privately, besides updating family, for over a week as we processed and accepted this next step. So when the NP from Dr. Hanley’s office called me yesterday I was expecting an official surgery date. Que instant anxiety. Instead I was completely taken aback when she said they no longer wanted to move forward with surgery this soon. The team re-addressed Beckham during the surgical conference and discussed using medication therapies first. This means starting two new medications and then having another cath to see if they make a difference.

These medications take about 3 months before they start having any effectiveness, and then another 3-6 months before we will be able to tell if they are actually working. So in about 6-9 months we will be traveling back to Stanford for another heart cath and potentially moving forward with surgery next winter. As I mentioned in my previous blog post, I know quite a few kids who are on these meds and have not found much if any relief from them. In all honesty I’m not so sure they will make a difference, but we all agree it’s certainly worth a try. There is no danger in putting surgery off for another year as long as Beckham’s heart stays the same or improves. If things begin getting worse then we will deal with that when it comes. But right now surgery is not an urgent or emergent need. So putting it off another year is completely acceptable.

Although it is a huge relief that we don’t have to put Beckham through another surgery in just a few short months, I definitely have mixed feelings about it all. Part of me feels like we are just prolonging the inevitable. Part of me is exhausted and anxiety ridden from being told no surgery, yes surgery in a few months, and now no surgery right now but re-address next year. It’s an emotional rollercoaster. And I don’t mean to sound ungrateful because it’s a welcome surprise. The more we can keep Beecham out of the hospital the better!

So we will hope and pray these medications work to dilate and open up his arteries. While also being realistic that surgery is still on the table for next winter. Since sharing my last post we have received such an outpouring of love and support. Our family is so grateful for every message, comment and phone call we’ve received. I’m not sure how we got so lucky to have the best family, friends and community of support, but we are thankful for each and every one of you. Beckham is such a special boy and he feels all of your love.

We will continue to keep you updated but for now we are going to enjoy the weekend and let this new plan sink in. This is life with CHD. Unpredictable and always changing. A complete rollercoaster of emotions. But we are #BeckhamStrong and can and will get through whatever comes our way.

Xoxo,

Heart Mama

Staged Repair

Four words you never want to hear: “Your child needs surgery.” We’ve heard these words too many times. In fact this is the now the fourth time we’ve been told this in the last few years in regards to Beckham’s heart and lungs.

Beckham had another heart catheterization at Stanford last Tuesday. His pressures have shot back up yet again and his heart is working too hard to compensate. The pulmonary arteries that go to the lower lobes of each of Beckham’s lungs have severe stenosis (narrowing). Back in February they put two stents in to try and keep these arteries open. The cath doctor ballooned open those stents last week. The problem is we’ve been traveling back to Stanford about every 6 months for interventional caths with ballooning, which seems to provide some relief initially, but after a few months the arteries narrow again and pressures shoot back up. If you can imagine a garden hose shooting out water and you kink a section of the hose. Pressure builds up, there’s excess back flow, and other parts of the hose might have to expand to compensate. It’s similar to what happens with Beckham’s pulmonary arteries. The blood flow going to his lungs cannot successfully travel when there are narrowed or “kinked” sections. There is backflow back to his heart. His heart has to work harder to compensate and in turn becomes larger. There are more complex pieces to the puzzle but that is the gist of what we have been dealing with for over a year.

Initially the cath doctor told us that she did not think surgery was going to be an option right now. She did not believe that Dr. Hanley would want to put Beckham through another grueling surgery for this. We figured that we would continue on our regular cath and ballooning schedule in hopes that eventually things would stabilize. Beckham was presented in the surgical conference on Wednesday morning and we were anxious to hear the results before discharge. Although to be honest we didn’t expect any difference in the plan. Well to our surprise our cath doctor came right to our hospital room after the conference to tell us that surgery was back on the table. She was just as surprised as we were and wanted to personally give us a heads up since she had just told us the day before not to expect surgery.

Dr. Hanley is a miracle worker and has saved countless lives. Most complex CHD babies born with MAPCA’s have a unifocalization, aka pulmonary artery reconstruction, then hopefully a complete intra-cardiac repair, and follow up with a post-op cath one year later to make sure things are growing and looking good. Ideally things would look acceptable at that time and the next surgery wouldn’t be for another 3-5 years for a conduit replacement. Well this has been Beckham’s 3rd cath since his last open heart surgery. Which is abnormal even for your “average” complex MAPCA kiddo, if there is such a thing. Beckham has not followed that ideal timeline. Not even close. But let me also say that I know many other kiddos who haven’t either. That’s one of the hardest parts with complex CHD and MAPCA’s. It’s unpredictable. Even kids with the exact same congenital heart defect can have vastly different medical journeys. So even though Dr. Hanley is a miracle worker, he can only do so much with the anatomy he is given. And he can’t control how the body reacts and grows, or lack there of.

Surgical Plan

Dr. Hanley wants to do things a little differently this time. Due to Beckham’s traumatic surgical history and post-op recoveries he wants to do a staged repair. This means breaking the repair into two separate surgeries, tackling one side at a time. He also wants to go in through Beckham’s side, called a thoracotomy, instead of re-opening his chest for the 4th and 5th time in a 3 year period. Re-opening the sternum and working through all of the fibrous scar tissue that has built up is extremely time consuming and a delicate process. By choosing a thoracotomy they will be opening fresh tissue which will also allow for a quicker procedure. I mean just about anything is quicker than a 21+ hour surgery… But by choosing to just do one side only during each staged surgery will keep the surgery time down. All of this will mean hopefully less time on by-pass for Beckham’s heart and ideally a smoother recovery. Fingers crossed Beckham won’t need to be on ECMO life support and that his body will heal quicker. Going in through Beckham’s side will also give Dr. Hanley more direct access to patch and repair the pulmonary artery. The narrowing is out distally meaning it’s closer to his lungs than his heart.

They will be doing stage one of surgery on Beckham’s right side first because that is the side with the worst stenosis. Then (assuming his recovery isn’t anything crazy) we would go back approximately 6 months later for stage two on the left side. We are currently working with the team at Stanford to narrow down a surgical date. Right now we are looking at surgery as soon as January or February, but I will update when we have a concrete date.

In addition to surgery the team is also looking into starting Beckham on 1-2 new medications. He has been on the borderline of receiving the dreaded diagnosis of Pulmonary Hypertension. Essentially his pressures are extreme enough that some would say he absolutely has PH but it has not technically been added to his long exhaustive diagnosis list. The medications they are considering would ideally help dilate the arteries and relieve some of the pressure from his heart. There is not a lot of data using these medications in pediatrics. From what I’ve heard of others experiences it seems like it works mildly for some and does nothing for others. So we don’t take this decision to add these meds lightly. However it seems like it’s probably worth a try to see if it can help Beckham. We are still waiting to hear what the final recommendation is from Stanford. There are many people who have to weigh in on these decisions including our surgeon and the pulmonary hypertension team.

I know this is a long update with a lot of medical information but we wanted to be as transparent as possible. It’s important to me to help others understand what is going on inside of Beckham’s perfectly imperfect heart. So many people see his rosy cheeks and infectious smile and don’t realize the daily battle he is fighting on the inside. As a family we are still processing all of this information ourselves. Surgery is the last thing we want to put Beckham through, yet alone two sets of surgeries. But we trust his team and want to do whatever is best for him. We will also have to figure out how to navigate all of this with a baby brother in tow and a dad/husband in medical school. We’ve been so busy since we received all of the news that I don’t think I’ve fully processed everything. It’s still sinking in. But sharing this news with the world definitely makes it more real. And I already know the second we have a surgical date scheduled that I will have my typical break down. It’s all a part of this life as a heart family. Thankfully we have the strongest heart warrior we know to get us through all of this.

Xoxo,

Heart Mama

Two Year Heartiversary ❤️

Wow, has it really been two years since Beckham’s very first open heart surgery? It feels like it was 10 years ago most days. Some days I can feel that day sneaking up on me like it was yesterday. It’s difficult to even type this post right now without tearing up. Luckily they are mostly happy tears with how far Beckham has come. With a few sad tears mixed in as I remember what his little 5 month old body endured. As well as his second huge surgery only six months later.

Beckham is the strongest kid I know. He’s so full of life. He’s a ball of silly energy and has the worlds best laugh. Beckham also deals with anxiety, fear of changes and new situations, hesitation to do anything unfamiliar without Mommy holding his hand every step of the way. Which by the way, I’m more than happy to hold his hand and will always be his biggest cheerleader. Beckham loves to show his love and gives us all hugs and kisses all day long. My favorite is when he grabs your face, turns it to his, and gives a big wet kiss on the lips. Beckham is independent and stubborn. He’s very strong willed, which I believe has helped him endure some of the toughest battles of his life. Beckham is also brave among the anxiety. Always putting himself out there and conquering his fears.

In two and a half years of life Beckham has been through more than most of us ever will. He has showed immense strength and determination to defy all the odds. Our old cardiologist in Portland once called him “the boy who lived”. With his first open heart surgery being 16+ hours, not going quite as planned, the team having a hard time stabilizing him and then one week on ECMO life support, things weren’t looking too good. Beckham’s third open heart surgery was 21+ hours, he came out on ECMO once again, had uncontrollable and life-threatening bleeding, and suffered a stroke. But we’ve never lost hope and neither has Beckham. He’s worked so incredibly hard with physical therapy, occupational therapy and feeding therapy to get to where he is today. And I couldn’t be more proud.

Complex CHD will always be there. Beckham’s battles are far from over. But today we celebrate. Today we will feel all of the emotions as we reflect on our journey. Today is Beckham’s Heart Day, or “Ba Heart Day” as Beckham says. Happy 2nd Heartiversary Beckham Wyatt.

Xoxo,

Heart Mana