Today was a low key day getting Rudy settled again and trying to put what we learned yesterday into perspective. Rudy is bouncing back quickly…he woke up uncomfortable and fussy but perked up after a dose of Tylenol. Rolf and I have been walking around in a bit of a fog not getting a whole lot accomplished but I’m thankful we had today to decompress.
So, now we sift through all our questions and try to figure out what it all means. As Rolf reported yesterday, Rudy’s lungs have not shown any improvement and because of the high pressures and his chronic pulmonary disease, he is not a candidate for the Glenn. His lungs would not be able to support the recirculation of the Glenn and he would, most likely, not survive. Needless to say, we are deeply disappointed. As it stands now, the Glenn is off the table. Unfortunately, Rudy would not be considered for a heart transplant either for the same reason. He would need healthier lungs to support the acceptance of a new heart. We didn’t inquire about a complete heart and lung transplant…it’s too early in the process to consider that, I think.
Both Dr. Harake (SB cardiologist) and Dr. Dan (UCLA cardiologist) agreed that the good news is Rudy is content, happy and growing in his present state. The shunt put in his heart during the Norwood procedure at birth has narrowed a bit (started out at 5mm and is now at 2.6mm) but is in good condition, allowing the necessary blood flow and his right ventricle is strong so he is in a “safe” place while we wait. Dr. Dan also pointed out (and we agree) that eventhough the results are not at all what we hoped for, they are definitive results making it very clear we are not to proceed with the Glenn. If there had been a slight improvement in the oxygen levels or a decrease in resistance, we would have found ourselves in a gray area with the temptation to move ahead potentially putting Rudy at great risk. Now, it’s very clear we wait. What we’re waiting for, however, is not so clear.
Drs. Dan and Harake didn’t want to comment too much on what options we may have until they conference with the rest of the cardiology team (which will happen early next week) as well as Dr. Shapiro (ENT) and Dr. Pornchai Tirakitsoontorn (Pulmonologist). It just so happens, we have a scheduled appt with Dr. Pornchai on Tuesday morning at UCLA and a follow up appt with Dr. Harake here in town next Friday so we should have more information by the end of next week. The bulk of our questions are for Dr. Pornchai at this point…we need to find out if there is ANYTHING we can do to help improve the health of Rudy’s lungs. Dr. Harake wants us to continue the two Pulmonary Hypertension drugs Rudy has been on the past 6 months. We hope Dr. Pornchai will know of any other medications or therapies that might address the ventilation and circulation issues in Rudy’s lungs. Dr. Pornchai has always been optimistic that the lungs would regenerate as they often do in the first 2 years of life. Since Rudy is now two, we wonder if there is still hope of regeneration or if we have maxed out on that window of opportunity and his lungs are as good as they are going to get.
Drs. Dan and Harake were able to reassure us, though, that we’re not dealing with a ticking time bomb. When Rudy begins to outgrow the Sano Shunt, it will be a gradual thing that Dr. Harake will be able to monitor during our monthly echo appointments. As far as we understand at this point, if Rudy were to outgrow the shunt and his lungs were still not ready for the Glenn, they could put in a bigger shunt. People have survived years with shunt replacements. Of course, this is not the best case scenario for us but it is comforting to know we’re not on the lookout for sudden heart failure!
There is still alot of discussion that needs to happen among the doctors involved and we’ll take our time to wade through all the information but, for now, we feel we need to make a big mental shift and proceed as if the Glenn is not an option in the near future. This is significant because there is quite a bit in Rudy’s care that we have shelved until “after the Glenn”. We feel (and Dr. Dan agrees) that our next step is to go to all of Rudy’s specialists and let them know that the Glenn is not an option and inquire as to how they would proceed in caring for Rudy in their area of expertise. Things like….revisit the plan to decannulate with Dr. Shapiro, talk to Dr. Kelts about Rudy’s food aversion and getting him to a food clinic of some kind, maybe changing the approach to his physical therapy, etc. Our primary concern has always been Rudy’s quality of life and that hasn’t changed but “quality of life” now has a broader definition. We don’t believe that Rudy’s condition is as good as it will ever be but we also feel like we are at a point where we need to provide an opportunity for Rudy is develop as much as he is able to in his current condition and not wait for his condition to improve as we have been for fear of putting too much stress on his heart, etc. We’re still not sure what that means for us exactly and we’re still trying to process our feelings about it all but we have hope, a deep trust in the power of God and love for each other so we walk in faith that these things will indeed remain throughout this journey – wherever it takes us.
Rolf and I are also very grateful for the care and concern we felt from Dr. Dan and Dr. Harake in all of this. Dr. Harake said at Rudy’s monthly appointment on Monday that he was so proud of Rudy and yesterday he sat with us for a long time as we absorbed this information and reiterated how exceptional Rudy is…very tender in his communication to us. We were touched this morning by a follow-up call from Dr. Dan to not only check on how Rudy was doing physically after his day in the cath lab but also to find out how Rolf and I were doing…so patient to address and affirm our concerns. One thing is for sure, we couldn’t be in better hands and we are grateful Rudy has a team both here in Santa Barbara and in Los Angeles that care deeply for him. We are blessed by them and you! Thank you for all the amazing comments, emails and Facebook messages…for your prayers and for feeling the hurts as well as the joys with us. We are overwhelmed with mixed-emotions but we are ever-grateful.
Rudy's Beat 
Wow! What alot to absorb! Thank you so much, Trish, for sharing in such great detail where things stand with Rudy. Our hearts are so weighted by the dissappointment regarding the Glenn, but so thankful, too, for the clear DETOUR sign that the testing provided. We are also encouraged by the caring professionals who are – and have always – surrounded Rudy. You are truly in “good hands”! Not to mention we have a Heavenly Father who also happens to be a pretty Good Physician Himself. We will continue to trust in His plans for Rudy and all of you as the journey continues its winding, up and down, crazy, amazing path. We love you!!
Wow. Full. Such heavy stuff. Your love for Christ, for the doctors, and ultimately, Rudy, is powerful. Thanks for sharing the nitty-gritty details and trust in whatever lies ahead. Love you guys. All of ya.
Trying to process what you are still trying to process. Prayers are going up for Rudy and your family all over the world, and although none of us knows that lies ahead, God knows. And while we all wait for answers, how wonderful it is to have that smiling, giggly, beautiful child sharing his life and his joy with us all! Thank you for including us all along your path.
Thanks for sharing all this info with us even when it is hard to write and even sometimes for us to read it as well. Praying for Gods perfect plan for Rudy what ever that may be. I know he is such a special little boy. Hugs as always.
Oh my. Such bittersweet times for you. All of this new information just sort of PUSHES you into that place of – one day at a time, one foot in front of the other, remembering to breathe and pay attention to every moment of every day… The God who caused us all to draw breath in the first place is not surprised by any of this – and he knows your very complicated emotions and swirling thoughts, too. I hope that is cause for some measure of peace for each of you. Some days that will be a helpful, calming thought – and some days…maybe not!
Please make space in your own processing for ‘venting’ your grief and frustration at this news. God surely invites us to bring all of who we are and what we’re thinking right out there into our conversations with and about him. And I also pray there will be room for living this next phase of Rudy’s life with as much joy as possible.
Knowing how you have handled everything thus far, I am confident you will pursue whatever next steps you can in terms of therapy/food aversion/trach removal/whatever else can be done to bring good things to Rudy as he is right now – not as you had hoped and imagined he might be after the Glenn. I am so grateful for this small miracle person – so buoyed by his evident love for all of you and his ability to find pleasure in small, lovely things…like a hopelessly silly daddy, a loving older sister, fun-loving and compassionate older brothers and a devoted and beautiful mama. May grace abide, may joy abide, may peace abide. You are loved.
First of all thank you for coming to my wedding. It was so exciting to see him there, happy and thriving. I am so sorry that the news from the cath was less than optimal. We were all hoping for the best. I know the future is uncertain and I wish I had some brilliant advice or solution, but I don’t. As for quality of life, judging from Rudy’s smiles and your family’s love, it seems Rudy has quality in spades. Stay strong Rudy-man, there are a whole army of people rooting for you. All my love to you.
“Happy at Home”….that caption and the precious picture was a comfort after that very detailed sobering report. Thank you Trish for being so thorough!!! I’m glad for the option of new shunts. Whew! So much for you to consider and adjust! Loves and more loves and still more prayers to you!
Thanks so much for sharing all that information with us. I feel like part of your family and I continue praying for all of you during this trying time. I also pray for the doctors as they assess the situation and come up with alternatives to help sweet Rudy through this difficulty. You are all an inspiration to me with the strength of your faith in God!
Rudy bounces back so quickly its hard to believe his little body just doesn’t want the Glenn operation. I have faith that your medical team will find solutions that will enable Rudy to live a full and robust life! I know it is hard when you have just been waiting for the yay or nay on the next procedure, hoping for yay and getting nay. Praying for divine guidance for the doctors leading the care team. Praying for you all!
I so wished and prayed that the cath would show some positive growth in prep for the Glenn. While the Glan seems to be out of the question, I’m sure an experienced team like the one you’re working with are sure to come up with a new plan of action. Rudy just doesn’t like to fit into the mainstream HLHS! Continued prayers for strength and guidance for Rudy, his docs, and you all!
The chair he is sitting in is a heart.
Good Morning Goleta/Santa Barbara. Steve and Michelle are off on their trip to Great Cayman Island and I am enjoying my time here in Overland Park with the Wilson teenagers. We are all cheering for the Rudy Team to come up with some alternatives — we wait with you in prayerful anticipation. 1-2-3-whee, Rudy! I had so much fun reading to you and playing with you and I miss you and your sweet family. God Bless!
Rudy’s bouncy unit looks just like a big Heart! He and you are held firmly in the center of Jesus’ heart, His love will sustain you.
Thank you so much for sharing your lives with us.
Much love,
Michele
Trish, I am so sorry about these results. We are praying for Rudy. Terry prayed for him at our Thursday evening prayer. God bless you and your entire family.
Reading these updates has become very important and I thank you for sharing your journey with us. I cannot think of a family with stronger faith and courage than the Geyling bunch. As we all process what is now known about Rudy’s condition the Mender family will hold you all up in prayer especially Rudy. The Geyling Family will be placed on the prayers of intercession at San Roque Parish, I will see to that.
Thank the Lord for Dr. Dan and Dr. Harake, you are so blessed to have such wonderful doctors that care about your problems and needs.
I really wish you all had better news but it does sound like there are some paths to go down. Glad Rudy and you all are home. I know you won’t…but don’t give up hope. You have an amazing team of doctors there and a great family and support network. I will pray the doctors come up with a plan very soon and nobody knows what the future might hold I understand the fogginess and uncertainty all too well We could use a plan of our own for Garrett too.
Keeping you all in my prayers.
Kathy
Thanking God that you were able to know what not to do and that Rudy is happy and content. Praying that you will have peace.
I always wait with anticipation for your posts. Since I often read it on my Android phone I find myself explaining your precious family to whoever I am with at the time. I continually pray and pray every night immediately upon putting my head on the pillow for Rudy and his family and what is current in his condition. Your support system is absolutely the best…your postings are amazing..I even read the last one twice to absorb everything. Hugs to your family.
thinking of you and praying for you. So sorry you and Rudy are in this circumstance! No words to describe the agony. so sorry!
Little Rudy’s face just gets me every time. I know that he has big things in store and his loving parents deserve a miracle.
I watched little Mason Strickland’s parents go through a similar experience
http://www.miraclemason.blogspot.com and they never gave up hope and neither did Stanford, CA.
When I saw Rolf giving inspiration and love to little Moriah and her Parents, I knew at that moment that God has a special plan for all of you.
I will continue to Pray for Rudy’s health and the knowledge that you need to find his miracle.
Much love
Cici
Wow! What a complex situation you and Rudy find yourselves in! Only God knows the answer to this one, and He has a perfect plan. I continue to pray for Him to give you comfort, strength and wisdom. Your faith and continued hope is an inspiration to all who know you.
Marlowe (friend of Helga)
I am very sorry to hear that the news from the cath was not what you (and we all) had hoped for, although I am glad that there is a definitive decision. You will continue to be in my thoughts and prayers through this journey and I know that you know you are in the best hands possible–both here at UCLA and especially in the Great Physician. I hope that Dr. T has some answers for you at your next appointment. Hang in there guys!
Praying for peace and confidence in God’s plan. Comfort too for the disappointment you are experiencing. I know your hearts are troubled and I pray that you would feel God’s arms around your whole family. xxooR
Lyle and I had the same observation about Rudy’s bouncy seat appearomg as a big heart surrounding him. Such a picture of God first and then thousands of hearts coming together to pray and encourage you. We have lumps in our throats as we read your comments and the other ones here and pray with that emotion to a God who sees, loves and guides.
You all continue to be in my prayers as you process this latest news. I will pray for encouragement and guidance in the days ahead. Blessings on you all.
I/we are praying for you. Your courage and commitment and continual
love in the midst of all this is a great testimony, not only to me, but many
others. Your example gives me courage to face my daily challenges, with
joy, and courage and love as you are. Know that all you are doing for your
Lord and for Rudy is not wasted. Your JOURNEY is challenging and an Encouraging chronicle to all who read. May God give you grace to continue
to shine in the midst of uncertainty and the unknown, as you cling to the
Rock that is soooo stable and knows all. May your trust in His great love
for you all give you great hope and assurance as you continue the journey.
I’m reminded of your song, Trish, Romans 5:(1-)5!
missed reading for a week, you are in my thoughts and prayers as I understand what the Glenn meant to you and Rudy; all we can do is take one day at a time….you are an amazing family and your faith will give you the strenth you need….most of All, Rudy will keep you going………Nick’s Grandma
We have been thinking of all of you. Wish we could be there in person to give you all a BIG HUG! We loved the picture of Rudy that you posted. You are in our thoughts and prayers. Love, Tatum/Daniel
I don’t mean to sound or be controversial, But we all live on a small globe out in the middle of nowhere, nobody really knows where we are in the scheme of things especially the relation to all the other planets, stars, and galaxy’s. A great man once said “we walk by faith and not by sight” and I am sure, thats how it has to be, sure we
all want to know, but our walk with Rudy is all about that Just Blind Faith. I am going to keep on holding Rudy in my heart, no matter what the news or prognosis says. I wish Rudy Love Peace and Joy forever. So, each day, stop for a moment and think about Rudy in a positive light and all that we wish for him in these challenging
times. There are many of us who are thankful for Rudy’s parents and family who have shared their daily walk about Rudy through pictures, and expressions of hope, its all so amazing to do this from a computer at home. Some of us still remember the snail mail days, smile! We need to keep walking with them and pray that their faith in this matter grows stronger.
With love and hope
Respectfully
Michael