Heart Surgery.....COMPLETE!

 Yesterday was the big day that we've been waiting 14 years for.....Dylan's pulmonary valve replacement surgery. 

When he was 5 months old, he had open heart surgery to fix the numerous problems that his heart had, being born with a congenital heart defect called Tetralogy of Fallot. Thanks to Mayo Clinic for this helpful page that describes this defect - there's a nice picture at the top you can click on for a very brief description. Click HERE.

Being back at Seattle Children's Hospital for another heart surgery yesterday took us right back to being there for his first surgery. If you'd like to read about his first experience and his 10-day hospital stay, you can jump back in time HERE and just click on "newer post" at the bottom of the comments to get to the next entry. There are 15 in total. I'm so glad I captured the experience back then.

It turns out that it isn't any easier to let your child go into heart surgery when they're 14 years old. We arrived at 12:30, waited, got prepped for surgery, and waited more. He finally went back at 3:00 pm.

Then we waited. The surgery lasted 3 hours. After the second hour, we got a message that the operation was finished, and we met with the surgeon while Dylan got cleaned up and came out of the anesthesia. We were so relieved to hear that the surgery went perfectly and that there were not any problems or abnormalities that they encountered. What a relief! 

Here is an x-ray of Dylan's chest from the side. 

Can you see the vertical/curved bone on the left? That's his sternum. And see those five wire ties on his sternum? That is from when they wired his sternum shut after his open heart procedure 14 years ago. It was crazy to actually see those! Looks like they've stretched with his growing bones over time. And if you look to the right of it, you can see the harmony valve sitting inside of Dylan's heart. 

Can't see it? Here, let me help:

 That curvy line coming up from the straw at the bottom is the wire they fished into his heart from the catheter (straw-looking thingy you can see at the very bottom). Amazing! There is a pig valve inside of the harmony valve, so now Dylan is part pig, which is pretty cool when you're a 14-year-old teenage boy!

For a really amazing 2 minute video of how the Harmony Valve works, check it out HERE.

 

We finally got to join Dylan after the 2.5 hour mark, and he was very sleepy.

They had multiple catheters in his heart, operated by 2 surgeons, and they entered the groin on both sides. They also intubated him during the procedure, so his throat hurt quite a bit afterward. 

We then got him transferred to his recovery room. 

He had to lay flat on his back for 4 more hours to allow the incisions at the top of both legs to clot. Here's Justin listening to his new valve and the "clicking" sound it makes.

Dylan finally could sit up and eat his first meal since 6:00 am at 10:00 pm. His food of choice: BBQ chicken pizza and a root beer float!

Our night was not filled with very much sleep, but this cute stuffed piggy from big sister Lindsey I think helped Dylan sleep a little better.

This morning we waited for an ECHO, which took over an hour,

and then an EKG to make sure that the valve is happy and working, and that the procedure yesterday with all of those foreign objects swimming around the heart didn't mess up the heart's electrical impulses to beat regularly. Thankfully, it doesn't appear that Dylan has arrhythmia.

We got the go-ahead to be discharged and left the hospital at 1:00 pm. 

Dylan is sleeping soundly in his own bed right now. He'll be taking things easy for a couple of days and should be back to 100% within a week, which completely blows my mind. This medical technology has only been available in the US for the last 4 years. Before that, Dylan's valve replacement would have been another open heart procedure with a 6+ week recovery time. I am so full of gratitude for this blessing and for the fantastic team of doctors Dylan has here. They've taken such good care of his heart and will continue to in the future.

We have received such an outpouring of love and concern from so many people.....thank you all. We love you. We have felt your prayers, your fasting, your positive thoughts and your love. We have the best village! Thanks be to God for His tender mercies, His miracles big and small, and for His continual watch-care over Dylan and over all of us. ❤️

The Operation Has Been Scheduled

 After lots of waiting, we have a surgery date......June 6th! 

We went in and had a meeting with the doctor who will perform the surgery on March 22nd, and got all the details ironed out. We finally got the call to schedule the surgery up at Seattle Children's this week.

Dylan will undergo valve replacement surgery on June 6th, and when he comes out of it, he will be part pig. I think that is the best part about the whole thing in Dylan's mind. If you see him afterward, you'll have to ask him about his best pig jokes....he's been working on some!

We are so grateful for this incredible medical technology that has been developed. We are amazed at what has become possible in Dylan's lifetime. He should be 100% recovered within a week, and will be back to school on the Monday after surgery if all goes well. Amazing.

Finally.....an Answer!

 

This process of figuring out how to move forward with a valve replacement surgery for Dylan has been a very long process, with a few bursts of progress and LOTS of waiting in between. 

We finally got a CT scan for Dylan on January 9th up at Seattle Children's. He got an IV for the contrast, and then spent some time in the CT machine, with directions to hold his breath throughout. It was a much faster process than the MRI. 

Then we waited for a long time as Medtronics, the maker of the valve, did an analysis to see if Dylan's anatomy was the right shape. (For more info, read previous post.) 

The office finally reached out to me to schedule a discussion with the doctor, but not until March 22nd. And of course they wouldn't tell me the results of the CT scan over the phone. 

Well, last night (Sunday) I got a call from his cardiologist, because she knew that Dylan's been anxious to hear the results, and the wait has been much longer than normal. She told me over the phone that Dylan is a candidate for the catheter procedure with the harmony valve!! We are so thankful. We'll get more information on the 22nd, but for now, Dylan knows that he doesn't have to do an open heart procedure at this time. What a tender mercy.

Thank you to all who have been keeping Dylan in your thoughts and prayers. We appreciate each one of you!

New Doc and New Info!

 We went in for a consultation about a possible trans-catheter valve replacement for Dylan last week. We learned a LOT and left feeling amazed.

Dr. Bellotti specializes in these kinds of procedures, and he was great at explaining things in detail and answering all of our questions. Here is a quick recap:

This is a harmony valve. It's made of a special mesh material and stainless steel. It can be squeezed and will bounce back out. It kind of feels like chicken wire. In the procedure, they would put a tissue valve from a pig into this harmony valve. Then they'd squish it down to fit into a catheter the size of my pinky finger. They'd put it into the main artery at the top of Dylan's thigh, fish it all the way up the heart, go through one valve, into the other side of the heart, and through the pulmonary valve. Once in the right position, they'd deploy it, and let it expand to fill the space. This would immediately push Dylan's current valve out of the way and fill the space so that the pig valve would start working right away as the new valve.

The part that just blew my mind is that all of this is done while the heart is still beating. THEY NEVER STOP THE HEART! So there will be forces of blood flowing in and out, and the heart muscle pumping the whole time. And it never gets attached in any way. The shape of the harmony valve sits right where the arteries take blood to both the lungs. There are no stitches or glue, nothing to hold it in place, except just the shape and the forces at play. If successful, they leave it there. And over the course of the next two years, the heart tissue would grow over it. 

Things can go wrong, of course. And there is a rescue line attached to it to pull it out if needed. And in the worst-case scenario, if rescue efforts fail, then it would turn into an open-heart procedure.

This particular valve that can be placed in an original valve has only been available for 4 years. It is incredible to me how this medical technology has developed. What a blessing for Dylan!

It was awesome to have him there to learn about his heart, and to be an advocate for himself, speaking up to ask questions when he didn't understand.

So the next step is for him to get a CT scan and angiogram to determine if his anatomy is the right shape for this valve to fit. In a normal heart, it is a Y shape, going from the valve and branching out to the lungs. But some people's arteries are shaped more like a T, in which case Dylan would not be a candidate for this procedure.

So our prayer right now is that he will be a candidate! Otherwise, we're looking at an open heart surgery and 6 weeks of recovery. Thank you all for your positive thoughts and prayers!

MRI #2

 Dylan went in for an MRI at Seattle Children's a couple of weeks ago, and we now have the results. It looks like it's time for a valve replacement.

On MRI day, I took Dylan fasting to the MRI clinic. We had a meeting with a couple of the cardiologists and Dylan consented to participate in a research study, where they were testing 4-D imaging. It resulted in 15 minutes longer in the tube, but a neat opportunity to help this new technology get tested. After getting his IV placed, they took him to imaging. 

He was in the MRI tube for 1 hour and 15 minutes, and he was a rockstar. MRIs on the heart include having to follow directions to hold your breath for long periods of time while they get the imaging needed. Dylan took all of it in stride. He was famished afterward, so we found some Chick-fil-A to eat on the way home.

The results: 4 years ago the MRI showed that his heart was "leaking" 50% of the blood backwards. Now it's up to 65%. In addition, he had a patch sewn in to repair the hole in his heart between the two pumping chambers when he was 5 months old. That area has become very stretched, and he has a pseudo aneurysm in that area. That's cause for concern. Also, we all have two arteries that take blood from the heart to our two lungs to get oxygen, and it's good for those arteries to be pretty balanced in the blood flow. Dylan's are now 30% on one side and 70% on the other, which isn't good.

What we are in the process of figuring out: 

• What kind of procedure could be done? (Trans-catheter, which would be pretty non-invasive and easier to recover from, or open heart surgery, which is much harder on the body and longer recovery times) 
• What kind of valve will he get? (He'll get a tissue valve....not sure if it will be from an animal or a human donor.) 
• When will this procedure happen? (Not sure yet....)
• Do we notice any signs of these changes in Dylan's heart? No. His heart is amazing. And his body has adjusted so well to these difficulties. But we want to do what is needed to keep him healthy before he starts to experience heart failure.

We have known that this would happen at some point, and we are so thankful for the 13 years that he has been able to live such an active, healthy life. And we're so thankful for the medical technology that is always advancing. What a blessing it is for him to be alive today, where there are doctors and procedures that can help him.

So, we are taking a big, deep breath, and moving forward. Here we go!

We'll share more information when we have his valve replacement scheduled. Thank you for all of the love, support, and prayers for this young man!

Change and an Old Friend

Dylan and I visited his cardiologist a couple of weeks ago. He's on the visit-every-six-months schedule right now. We started with an Echocardiogram, to take a look at his heart via ultrasound. Then we went next door for an EKG and regular checkup. 

Unfortunately, the EKG did not work properly, so we didn't get any helpful information there. But the Echo provided enough to give the doctor a bit of concern. 

Turns out that Dylan's heart....while still doing pretty great....is starting to show signs of dilation. To give a quick re-cap.....Dylan's open heart surgery at 5 months of age repaired most of the defects that he was born with. But in repairing the pulmonary artery, the surgeon had to cut through the valve. Ever since, Dylan's pulmonary valve has "leaked," or allowed blood to go backwards into the right side of his heart. Four years ago, he had an MRI done to get much more detailed information about how bad the leak was. The MRI showed that he lost 50% of the blood back then. Amazingly, his heart was a rockstar (which is quite an understatement!) because it adapted, and you couldn't tell at all that his heart pumped differently than another person's. When doctors expected to see signs of his heart weakening (getting tired easily, not being able to keep up with other kids, turning blue, having cold sweats, etc.), they couldn't find any evidence. 

Since then, Dylan has been active and normal, doing competitive ballroom dance, racing his bike, running, and even doing challenging hikes (Mailbox Peak, and Granite Mountain, just to name a couple). Even now, we don't see any evidence on the outside that things are changing. But the Echo says differently. 

So, it's time for a new MRI. This will give us a new look that can be compared to the MRI from four years ago. Hopefully, we'll get that done in the next couple of months. At that point, it will be time to discuss next steps.....including valve replacement surgery. 

As a sweet bonus.....we were at back-to-school day this last week, and we happened to run into one of the nurses who took really amazing care of him after his open heart surgery as an infant. She was amazed at how great he was doing. I know she loves what she does, working in the Cardiac ICU at Seattle Children's, but there are hard days. She kept saying how encouraging it was for her to see him, 13 years later, healthy and strong. 

God bless the amazing people who have helped to care for my boy and his special heart, even before he was born. 

13 years old and a Follow-up!

Well, Dylan is officially a teenager now and growing! He had an appointment with his cardiologist this morning and grew 1.5 inches since his last visit with her six months ago. 

Today was pretty routine and quick. He did an EKG, which measures everything about the heartbeat. Comparing it to the one we got six months ago, there is very little change, which is good. His right pumping chamber is filling slightly slower now compared to six months ago. When that number gets significantly bigger, that will be bad news. So right now he is stable. That means he can keep doing everything he’s doing for now. Whew!

Now that his body is growing more rapidly, his doctor is expecting for things to change any time. If we’re lucky we’ll get 1-2 more years of him being stable. 

Here’s a few of the questions that are always asked:

*do you ever feel weird heartbeats, racing?

*do you ever experience chest pain?

*do you ever have shortness of breath?

*do you feel like it’s hard to keep up with other kids?

* do you get tired easily?

* do you feel chest tightening?

*have you ever passed out or felt lightheaded?

These are the things we are keeping an eye on.

I remember when he was a baby and we were dealing with major heart problems, open heart surgery, and looking at his future, this doctor said that it would be really amazing if we could get him to his 13th birthday before a valve replacement was needed. 

Well, he’s made it to that milestone and I’m so grateful. He’s had many years of normal growth, regular physical activity, and no restrictions or medications. How amazing is that? We’ll take all the normalcy we can get! 

We'll go back in six months for another appointment. And Dylan will be due for another MRI this summer. We will get to see what the backflow rate is now compared to the MRI he got three years ago. That one showed that he was losing 50% of his blood to a leak in his pulmonary valve. And yet, he's going strong. He has one amazing heart!