Hi Rudy Fans! First of all, sorry for the silence. I was writing posts yesterday from my iPhone and between my own incompetencies and wireless dead spots all over the second floor (due to all the radiology equip), I thought a quick update about us leaving the hospital posted. Now I know what the “what’s going on?” e-mails and texts were about.
First a more detailed recap: Our day started early with us pulling out of SB at 4:20am. The upside of leaving that early is no traffic and, even with a stop for gas, we got to UCLA by six to go through check in and prep. Before too long, we were rolling to the Cath Lab at 7:30. As has already been documented, I got to be the one parent to go in until Rudy was under. The second floor always makes such an impression on me–they mean business there–big hallways, everyone gowned, big pieces of equipment standing at the ready and crews of attendants purposefully moving patient gurneys with quiet focus. You stay with your escort because every corner looks the same and the signs tend to be jargon and technical abbreviations. If you don’t know where you’re going, you’ll quickly be identified as someone who shouldn’t be there.
Even though Rudy is twice the size now, he still looked tiny when he was placed on the end of the 12ft table in the Cath Lab. He fussed a bit and for some reason, wasn’t able to draw comfort from Daddy in his bunny suit. Before too long, the Anesthesiologist came in and gave the resident the OK to start the gas and after just a few breaths Rudy was in a happy place. So small and peaceful one could easily overlook him in the middle of all the screens and huge machines that make up the Cath Lab.
Trish and I were glad to discover that one can now check out a pager from the surgery waiting room so you don’t have to sit there and bite your nails with a roomful of uncomfortable people. We headed to get some breakfast and soon found ourselves in a mini-reunion in the dining room as doctor and nurse friends came by to visit for the next three hours. Some just happened to be walking through; others had seen us on the schedule and figured they’d know where to find us. Thanks, friends–sitting there catching up with so many dear people was a far cry from those first waits where we sat in anonymous angst as the clock ticked on. Even though it’s an unwanted journey, we can’t help but wonder how robbed we would be had we not met the precious people that came with it.
Good company made the time go quickly and at 11:30 Dr. Harake came to get us so we could sit down with him, Dr. Dan and Dr. Brian to go over what they found on the cath. The good news is that the heart looks very good. It is pumping well; there is no leakage or reguritation in the valve, all the pressures they rattled off in all the different places are where they need to be; the Sano shunt Dr. Brian put in is only narrowed slightly on one end, but still quite clear; the pressure in the pulmonary veins is where they like to see it. Perhaps the only negative cardiac issue is that the heart is enlarged, but that’s not surprising as it’s working hard. The team did not see any need for interventions (coils, stents, etc) of any kind.
The main area of concern continues to be Rudy’s lungs–which has significant relevance to the Glenn recovery. In healthly lungs, blood is 99-100% oxygenated as it emerges from them and Rudy is 87% on his left lung (perhaps acceptable) and 74% on his right lung (far below optimal). There are perhaps three causes for the chronic lung disease Rudy is struggling with: 1) the extended time he spent on the vent; 2) the struggles he had with chylothorax and the measures the team had to take to stop it; and 3) perhaps some initial deficiencies he was born with. At the cath back in June, the right lung saturation was about 72%, so there hasn’t been much improvement (though Dan points out that this is better than it declining further).
The team would obviously prefer to do the Glenn with the lungs in optimal shape but there is no clarity on how long this will take and if it’s even possible. The risk of waiting is that Rudy’s heart function will fail at some point and he’s already far past the typical window for this. So, the plan is to consult with the pulmonologist to see if there is any reason to believe that Rudy’s lungs can see substantial improvement over the next six months. If that’s the case, then it may be worth the risks that come with waiting. If there’s no clear assurance things will get better in that time frame, then we’ll likely schedule the Glenn in the next 30 days and move forward.
There were two specific things we had been praying would come from the cath: 1) Evidence that Rudy’s lungs were healthy and 2) a definitive date scheduled for the Glenn. We’re glad for the positive reports that came regarding Rudy’s heart, but it’s been a bit of a struggle to come up empty on the two items we were hoping for. We didn’t have much time to think about it yesterday as we met up with Rudy in recovery and sat with him for 4 hours until he was cleared to go. Between the scheduling issue that bumped us to first case and the fact that Rudy didn’t require any interventions, they would only keep us overnight if Rudy was having problems coming out from under anesthesia, but he was awake before they wheeled him out of the cath lab. He dozed off a bit here and there, but was otherwise happily calm.
Based on our past history, I think we’ll have a hard time packing for a simple hospital overnight ever again. We proved we can re-assemble the mobile command center that carried us through seven months in short order, however, the only problem was that we hadn’t packed anything for Rudy (like his food and medicine), so that’s why we’re grateful to have friends in the right places–angels in the CTICU (Thanks, Jennifer!) got us squared away with provisions for the drive home. We hung around LA for awhile and had dinner with friends, both to wait out traffic but also to stay a bit close by the hospital (just in case) before we made our way back to SB later in the evening.
After the long day yesterday, we’ve taken it easy today. The big kids went off to school so Trish, Rudy and I layed low, only venturing out for a quick picnic down by the beach. Rudy slept a bit more than usual and concerned us awhile when he looked blue and his sats were in the 50s. We entertained calling down to UCLA until we discovered that his O2 hose was disconnected from the concentrator. Duh! Rudy has proven he can overcome incredible obstacles, but can he survive us?
I’ll try to put words to how we’re feeling as we’ve talked and tried to process yesterday’s results. I’d have to say we’re feeling EVERYTHING. That’s the best way I can put it. Disappointed because we didn’t get the answers we were hoping for. Weary because we’re still resigned to living life with an uncertainty that doesn’t allow us to plan more than a few weeks at a time. Crazy in love with this little boy who weathers all of this with such serenity. Sad that he has to weather it at all. Awed by courageous people and an incredible facility that focuses so much expertise on us. Grateful that the first step of the repair done on his tiny heart not only lasted longer than anyone could conceive, but through more complications than most would imagine. Impressed with older siblings who love Rudy and are shouldering what all this asks of them so well. Regretting that this is turning into such a big part of the story of their childhoods. Confounded by the irony that Rudy has a major heart defect but that’s turning out not to be the most difficult thing for him to overcome. Grateful for friends and family that pray for us and don’t leave us to walk this alone. All at the same time. We’re feeling EVERYTHING.
Rudy's Beat 
ever so grateful for the detailed report. thank you. it was the “crazy in love with this little boy who weathers all this with such serenity” that started me crying. he is truly amazing. much love to all of you!
He looks so strong, it is hard to imagine anything could be amiss in his insides. I’ll take your word for it and I really have to believe the love and care that he receives from all will continue to keep him strong and happy. Sorry about the vomit bug, happened in my family years ago and we still chuckle over the deposits on shoes left by the beds. Horrible thing, until we laugh over the memories thirty years down the road.
Man, we know how hard it is to not have answers and continue waiting. I’m so sorry that you didn’t get the answers you were hoping for. Lungs, lungs, lungs, ahhh we never knew that was going to be the huge issue. Praying for you and your entire family
Rolf, I cannot help but get choked up when I read these, thank you so much for sharing. Jen and I will continue to pray, if I could write like you do I would. Instead just know that we love and admire you all and send our hearts out to you.
RUDY!!! We are praying for you! You have such wonderful Parents and sibs, and we are so lucky to be friend with you.
See you soon!
Much love,
Michele and Bob Ftich
Dear Rudy: I have heard a lot about you, and I am eager to meet you.
I think you are very brave, and I think I can learn something from you.
Plus I want to meet your passy monkey friend. I will bring him a banana.
All the best,
Earl
Oh my, yes. ALL of the above. Thanks so much for the full and rich report on our favorite almost 16-month-old boy! We will continue to pray for lung improvement, for clarity from the pulmonologist, for a firm date for the Glenn that feels as ‘safe’ as possible for all of you. The roller coaster is gearing up for another of those wild rides you seem to take with alarming regularity. I am just so grateful it’s been on hiatus for a while here! Please know that you all are in our prayers and ultimately, in the hands of our good God.
Oh, how hard this is for all of you, but most especially for you and Trish. Thank you for capturing the wild assortment of emotions that are part and parcel of such a journey and for sharing them so eloquently with all of us. I keep hearing the song, “All who are thirsty, all who are weak – come to the fountain, dip your heart in the stream of life. Let the pain and the sorrow be washed away in the waves of his mercy as deep cries out to deep…Come, Lord Jesus, come.” I sing it for you tonight, dear friends. There is no sorrow like that we carry for our hurting children. Let deep call out to deep – and COME, LORD JESUS, COME. Blessings and love.
P.S. Griffin’s leg was successfully ‘reduced’ under anesthesia and he is now in a bright orange cast up to his belly button – and not entirely happy about it, either. I am on the web trying to find a pediatric hospital bed to rent for a few weeks as he ain’t gonna be sittin’ anytime soon.
What a great way of putting it….you feel everything….You both have such a depth of love and sensitivity….well all of you do….so glad you didn’t have to stay overnight…
We’re with you in prayer….
so beautifully written…we feel it all with you, dear friends.
we continue to think about your family, and pray for rudy.
much love,
justin and victoria nelson
Love you guys. Good job Rudy, love you little man.
Everything is an apt description.
I’m sorry you didn’t get better news about the lungs.
The pulmonary pressures being normal is really good news though and the needs for no stents or coils is also good. All of Garrett’s problems have stemmed from rotten pulmonary pressures so I was happy to hear Rudy’s look good.
I will PRAY for Rudy and specifically for his lungs and lung function.
Keeping you all in my thoughts and prayers.
Kathy
Love you guys and thank you for the up date…..we’ve been praying for you and love you…..will continue to pray…
Well, time to pray for another miracle regarding Rudy’s lungs. He is SO CUTE! Thanks for keeping us up to date.
We are so thankful that it was a short stay in the hospital.
We will be praying for Rudy’s lungs. We appreciate your
positive outlook in the midst of “feeling everything”! God Bless!
Beautifully written. Thanks for sharing your journey. Am continuing to pray for Rudy and your family. Dr. T and Dr. I are wonderful. I hope they have answers for you!
Thank you for the update – We also feel everything while reading – rejoicing, crying, laughing and especially the urge to pray. Will do it!
I still feel so blessed that you continue to be courageous enough to share this journey, and ALL of the feelings. Thank you Geylings, and bless you Rudy.
Standing by……………
We are praying, praying, praying.
I bet it is hard waiting and waiting. I will keep praying for peace, answers and for little Rudy and he marches strong thru this journey!
We are feeling everything with you as well. We have been walking with you through this whole journey and can honestly say we know exactly what you feel. I just want to say thank you. You write everything so clearly, I don’t know if it’s because we know what the hospital looks like, know the doctors personally, and or know exactly what chylothorax is. I do know that we are so happy that Rudy is doing sooooo well. We pray everyday for strength, for us and for our dear friends. We love you guys!! Go Rudy Go!!!!
Rudy, I was hoping to give you all a (((squeeze))) today @ church but Brody is sick so I couldn’t make it. We’ll keep praying for those lungs!! And know that I send up a little “arrow” prayer every time I look @ my Rudy bracelet. God is so GOOD…we’ll just keep trusting Him that in a few years we’re going to see you climbing all over that play structure up at church. 🙂 Love you all
SO sorry to miss seeing you guys last Thursday… I am so glad the cath went smoothly. Rudy looks wonderful… we will continue to keep you in our prayers as we have been. Thank you for sharing such a wonderful heartfelt words as always and thanks for keeping us posted. Much Love and blessings, Lisa, Paul, George and Nick
prayers for all, understand a little of what you are saying and what you and Rudy went through, Nick’s Grandma
We just don’t know what to say. You are all in our thoughts and prayers–Rudy especiallly.
We love you!
Rich and Natalie
You are such a dear family. My prayers are constantly with you all. Love Sydney
Our prayers continue. . . I know the frustrations you feel, and often wish our team would have spent a little more time on Ethan’s lungs. But his shunt was narrowing alot. Isn’t it CRAZY when you get to the point in this journey and say “Why couldn’t he only have HLHS?” I could deal with just that! (when before birth I cried thinking just HLHS was the worst thing in the world!) You guys are amazing! May all the blessings you need pour out upon you while you STAY THE COURSE!
My continued prayers are with all of you!!! Keep the faith, stay positive and be strong!!! You really do inspire me to quit thinking about the nonsensical things in life!! LOL! Serious!
Love to you all!
Tanya