I’m ashamed to admit that I really didn’t know exactly how the heart worked before Rudy’s heart defect was diagnosed. I knew that it pumped the body’s blood to where it needed to go but beyond that I really didn’t give it much thought and, truly, took the heart for granted. Even after Rudy’s diagnosis, I had to reread the “If Your Child Has A Congenital Heart Defect” booklet we received from the cardiologist a few times to wrap my brain around what exactly was going on in our son’s heart and still couldn’t quite grasp the complexities of it all. As we prepare for the 2nd of Rudy’s three heart surgeries, I thought it would be helpful to explain (as best I understand) what’s going on in Rudy’s heart and what will be asked of it in this next phase of his treatment to kind of put things in perspective.
Rudy had his monthly cardiology appointment with Dr. Harake yesterday. The symptoms surrounding his pneumonia diagnosis last week really weren’t addressed specifically but the issue of his general health is key as we approach his scheduled heart cath on October 21st. Should he get sick, the cath will have to be postponed so we are praying for a speedy recovery and good health from here on out – especially as we head into flu season. In regards to his heart, everything looks about the same and we will see Dr. Harake one more time in mid-October before we head down to UCLA for the heart cath. There is evidence, however, of the possible narrowing of Rudy’s aorta – a condition known as “Coarctation of the Aorta” which makes it hard for the blood to flow through this artery to the lower part of the body. This is something Dr. Harake has been keeping an eye out for and could be happening now because the aorta is not growing with Rudy. Dr. Harake and the team at UCLA will verify to what degree the aorta has narrowed during October’s heart cath and, if needed, perform a balloon angioplasty to open it up.
So, here’s my simplified explanation of where we’re at and what’s coming…
In a normal heart, the blood low in oxygen flows from the upper body back to the heart through the SVC (Superior Vena Cava) into the right side of the heart (right atrium and then right ventricle). The right side of the heart pumps the blood into the pulmonary artery which takes it to the lungs to get fresh oxygen. After the blood is refreshed with oxygen, it returns to the left side of the heart (left atrium and then left ventricle) where it is pumped to the aorta and taken to the body’s general circulation.
Because Rudy doesn’t have the left side of his heart, he is currently known as a mixed-blood baby. His oxygenated and non-oxygenated blood flows through the shunt that was attached in his first surgery (Norwood) – see diagram above. The Glenn procedure will begin the process of separating his blood. In the diagram above, you’ll see that the SVC that is bringing the blood from the body back to the heart is located in front of the pulmonary artery at a 90 degree angle. In the Glenn, the SVC is severed from the heart and attached directly to the pulmonary artery. Essentially, we’ll be relying on the blood from the upper body to “drain” it’s way directly to the lungs instead of being “pumped” to the lungs through the heart. The success of this procedure is dependent on good lung health as well as little blood resistence so the blood is allowed to drain into the lungs. (Rudy has been treated with two Pulmonary Hypertension drugs for the past 6 months to reduce this resistance)
I was rereading the history of one of our HLHS friends who passed away last year after his Glenn and his mom described it as “his body couldn’t adjust to the recirculation of the blood”. This was helpful to me because it reiterated the fact that we are completely rerouting the circulation of Rudy’s blood in this process…asking his body to do something that it wasn’t intended to do. We are asking A GREAT deal of his little half of heart and surrounding, compromised lungs! And so, it motivates us to pray…to pray fervently and specifically in preparation for the Glenn…whenever it happens. We’re doing all we know to do to keep Rudy healthy and strong for the Glenn but, ultimately, the success of this next big leap is out of our control. We pray for God’s continued protection and mercy AND perfect timing for surgery as we prepare to move forward.
We humbly ask you to join us in praying specifically for the things mentioned above…may our prayers weave a blanket of protection and comfort over Rudy that will prepare him and surround him in the weeks and months ahead. 🙂 As always, thank you…we are so grateful for you! Love and Hugs…
Rudy's Beat 
Oh I will pray, I will pray!!! My main prayer is “Lord, let Rudy grow up strong and healthy.”
Thanks so much for the cardiology lesson. It really helps!
Hugs to you all,
Michele
I wonder if somehow your good (and difficult) grappling with this technical info and the resulting deeper understanding of what is going on with Rudy might somehow give you just a tiny feeling of ‘control’ over this entire mystifying, horrendous condition! Answers – even hard answers – and objective information can be really helpful to us in the midst of heavy anxiety – as you have surely been for a very long time now. So I thank you for taking the time to post this information, to give us a sketch of what happens where, and to ask us for a specific list of prayer requests – which I know all of us will be privileged to include in our times of conversation with God about the Geyling family! I can feel the tension building in you, Trish – you do such a magnificent job of dealing with all of this, sweetie. Such a good job. And so does Rolf. Boy, it’s hard, though, huh? So we’ll all start visualizing a successful ‘recirculation’ system for Rudy following the Glenn: for a healthy boy between now and then, for a successful plasty, if that is needed, for power, power, POWER to those precious lungs!! May the pneumonia clear well, leaving no scars and may you all continue to find joy in each new milestone reached by this miracle boy and his miracle family. You are loved. You are held. God is good. All the time.
You, your family and Rudy will definitely be in my prayers this coming month.
what a great time we had with Rudy and ALL on our visit.
We’ll pray more than ever for our llittle trooper and all of your peace of mind.
Thanks for working so hard to help us understand this better. It’s still difficult for us to get a complete “grip” on it, but now we better understand why this surgery produces more anxiety than some of the others. We ride this journey with you the best we can across the miles…we pray for you as you face such difficult decisions.
We are always praying for Rudy!!
Also, love that Teresa isn’t the only one using coupons the night before the expire!!
After the last few humorus posts, this one is such a sobering reminder that we are still waging war on this enemy called HLHS and Rudy is Ground Zero! The progress of the past several months and the relative calm – up until the recent ED episodes – had me a bit in a lull with my prayers for Rudy. Setting the stage for the Glenn so clearly gives me a much needed boost to pray more fervently and more specifically for Rudy during the next several weeks.
Thanks, as usual, for keeping us up-to-date and informed. We love you!
Thank you Trish for breaking this down for us….yes, we will pray!!! It all seems so overwhelming…and amazing at the same time. I can’t imagine what it feels like as the parents. This is not difficult for the Almighty who loves us and we will beg him on your behalf!! Love you all much!
Well I get a better idea now of what’s up with Rudy’s heart. Thanks for the info and we’ll all keep praying, knowing that he is in Gods perfect hands and his will is perfect for Rudy and us all. Hugs and kisses as always.
I’ll be constantly praying for you all and for Rudy. Love you all so much!!
Wow. I feel like I’ve been praying much less about Rudy lately. I think I lapsed into a comfortable feeling that he was growing and getting stronger, and I actually haven’t really given the upcoming Glenn procedure much thought.
WAKE UP CALL! Trish, I’ll be thinking of you all and praying daily. I know we are all in the Lord’s most loving and capable hands, and that His plans for Rudy will take away all our angst and worry.
Please try to be calm and know that Rudy is in the best hands possible–both surgically and spiritually!
MUCH LOVE,
Deni
As always Rudy and your family are in my prayers. Hoping his body heals from the pneumonia and is on track for October!
Thanks for the explanation of what the Glenn is supposed to do.
Praying for Rudy and you all! Trish, you are so funny…..late night trip before the coupon expires. 🙂 Too cute!
Trish and Rolf-this post was such a help in understanding Rudy’s condition and what to specifically pray for him! Thank you so much for taking the time to explain in words and with the drawing. God will continue to do a work on this creation of His! Will be praying fervently.
Nick, now 11yr., had surgery for the pulmonary artery to the lf. lung…..as his Grandma, I often forget the work of the HLHS people; but I never forget to pray for them. We can be of any support, know my daughter would talk , email or whatever……..prayers for Rudy and all, Nick’s Grandma
Praying for Rudy and for you all. Can’t believe the little one is almost 2!! Love to you all!
Thanks for the heart lesson.
I too, ‘lapsed into a comfortable feeling that he was growing and getting stronger’, along with having no idea what was involved with the Glenn. Amazing!!! I will pray more consistantly.
Much love and blessings to you all.
Jo
Sept. 20th is almost here and I will be landing in Santa Barbara. It has been such a long wait but I am prepared now to leave home behind and concentrate on how I can help out there. See you all soon.
Am praying for Rudy, too! May God give you grace & strength!
Truly when someone doesn’t understand after that its up to other viewers that they will assist, so here it happens.