Palliative Care With A Plan vs. Without

Rolf and I had another early start Tuesday morning to make it to UCLA for a 9am appointment with Rudy’s pulmonologist Dr. Pornchai Tirakitsoontorn.  We were eager to talk with him and hear his thoughts about Rudy’s heart cath results.   Like us, he is surprised by the lack of pulmonary progress which doesn’t leave him feeling very positive.  The fact that there hasn’t been any change since January’s cath is not a good sign in his opinion.  The lungs can regenerate and see rapid growth in the first two years of life…regeneration can happen up to age nine but at a much slower rate.  He is not, however, without hope.  He said he had patients in the past who, at age 3 or 4, all of a sudden saw pulmonary growth so he is not giving up hope for potential improvement for Rudy but there isn’t anything we can do to promote that growth.  There isn’t a drug he isn’t already on or a lung treatment that will improve the issues of O2 sats and pulmonary pressures.
Since the Glenn is not an option at this time, he is recommending decannulation and would like to start the process of setting up a sleep study at either Chilren’s L.A. or Orange County to make sure Rudy can breathe without the trach overnight before we begin weaning him.  Rudy’s ENT, Dr. Shapiro, will also need to weigh in and let us know if the scar tissue in his airway needs to be removed before or after the sleep study.  Either way, it will need to be removed before we can wean him so his will be a slow process of decannulation.
After our appointment with Dr. Pornchai, we met with Dr. Rick over coffee (and a diet coke!).  He reviewed the cath results and talked with Dr. Dan so he was up to date on the latest.  As always, we appreciated his time and found it comforting to talk through the “big picture” with him.  He couldn’t offer us any new alternatives or a “plan B” but he was reassuring.  At one point I asked him “What do we do, Dr. Rick?” and his reply was “just what you’ve been doing!”.  Rudy’s heart surgeon, Dr. Brian, met up with us in the hallway and confirmed that there is nothing surgically he can do for Rudy at this point but that he could put in another shunt if need be.  So, we didn’t get news of options for Rudy but we were  comforted to touch base with key members of his team.  We just kept asking the same questions to everyone hoping someone would give us a different answer…but everyone is in agreement.
I met with Rudy’s SB Endocrinologist today and updated him.  At one point he said to me sympathetically…”The heart surgery is no longer an option (That’s right) and you understand what this means (Yes, I do) Well, you are doing remarkably well.  Rudy is strong and you continue with his palliative care”.   When we talk about keeping it all in perspective, I think this is key to remember because nothing has really changed in Rudy’s condition or care.  His treatment plan was never “curative care” – his has always been “palliative” (Medical or comfort care that reduces the severity of a disease or slows its progress rather than providing a cure).  I guess “palliative” feels alot more secure and less threatening when there’s a plan in place (i.e. The Glenn procedure) but our goal with or without a plan remains the same…just like Dr. Rick said!  We do all we can to keep him healthy, comfortable and happy.   And whether we are waiting for that “touch of God” pulmonary healing, new medical advancements or letting go, the reality is God is in control of it all and we’re all in His hands.
When we left yesterday, Dr. Rick walked us to the elevator, gave me a big hug and told me not to worry about Rudy…just love all the kids.  It struck me as we were driving home just how good his advice is.  When you are stripped of a plan of action, it’s real easy to get caught up in the disappointment and obsess over the lack of a plan…we need to resist this temptation and live life in the moment…loving our kids and believing wholeheartedly that we will navigate through this no matter what.  Rolf and I both feel we need to face the harsh reality but do so with deep hope.  Whatever will be WILL BE and we have no less control over what is to come than we did yesterday.   My mind is adjusting but my heart is slow to follow…our hearts are breaking.
Waiting for Dr. Pornchai
Daddy teaching Rudy "Udder Ball"!
We didn't mind the wait except "Nasonex"-man kept creeping us out...
Cherished moments
A stop in the CTICU...glad to see Drs. Robert and Rick & Nurses Denise and Vicky
To add to the drama this week, Rudy has discovered how to pull off his oxygen mask and freely demonstrated this new skill throughout the day yesterday!!  A little frustrating since we’re dealing with a two-year-old who suddenly has an ornery streak!!  We certainly don’t need him sabotaging his own treatment at this point.  It was a little frightening to wake up this morning and find he pulled the mask off during the night…we’re not sure how long he was without oxygen but he seemed ok today.  When we wean him off the trach, he’ll need to get his oxygen through a nasal cannula…yeah, that will go over real well!!!  Ok experienced heart moms…HELP!  The crazy boy has and always will keep us on our toes…thank you for your continued prayers.  Your prayer support is essential to us and we are grateful!!!
Rudy's new trick!

25 thoughts on “Palliative Care With A Plan vs. Without

  1. Miracles happen. I have personally witnessed a few. I do know of kids who weren’t surgery candidates who later were. I also know medicine progresses and discoveries are made.

    In terms of the oxygen, can’t really help too much with the mask. For the canula, there are these things called tender spots. They stick on the face and have a plastic thing that can help keep the o2 in place. They work for the little ones but for bigger kids they don’t help because they stay on the face which Garrett does not appreciate We are fighting the battle of the canula with a 13 year old. He is such a restless sleeper it comes off and when we use tape his skin is so sensitive the first layer comes off. Since Rudy is so little perhaps the tenderspots are good option. We also used tegaderm when Garrett was smaller but it too can be rough on the skin.

    Keeping you all in our prayers.


  2. Praying for miracles, but realize the real miracle is that Rudy was born into YOUR family, full of loving caring brothers sister Mom and Dad grandparents and godparents Aunts and Uncles.

  3. Oh sweetheart – this is such a painful shift in your thinking, isn’t it? You are absolutely right – and so is (big surprise!) Dr. Rick – you are to keep on doing what you’ve been doing — loving Rudy, enjoying him and all his bigger sibs, working with your variety of medical support staff to get him off the trach and onto oxygen, etc., etc. What you have today is what you had yesterday -minus the back-up plan.

    Who knows what else may evolve as you walk through these days? Healthier lungs? Maybe – we pray so. Possible treatment options? Always possible, always – new developments daily in medical science. A shorter life for Rudy than what you and we have all been dreaming about and praying for? Yes, that is also possible. But such a life, Trish, such a life! Oh my. I continue to pray that his will be longer and healthier than we can even conceive of today – but I know, as you do, that that may not happen. The reality of that possibility is what’s breaking your sweet hearts right now – it’s hit harder and deeper than ever, I imagine. And for that, I am so very sorry.

    This one small life – your Rudy’s life – has been the source of deep joy to so many, most especially to you and Rolf. I hope – I wish – I pray that it will be a long life. BUT, however long it is, I will never stop thanking God for this boy and for your fierce mama love and Rolf’s tender, strong commitment to him, to you, to your other kids. That does not in any way make up for the intensity of your pain and his suffering. But it does show us all the shimmering thread of God’s redemptive power at work, even in the midst of all that’s hard and tough and puzzling and painfully sad in this oh-so-human life we live here on planet earth. May the God who loved us enough to give us full freedom to choose to love back – may that good and sovereign God be present in powerfully personal ways to each of you and to both of you together. Love you.

  4. Wishing I could be with you and give you a big HUG! Reading this post makes my heart heavy. But I am immediately reminded of King David’s charge to Solomon….Be strong, be courageous and do the work. You and Rolf have done this from the very beginning. I have no doubt you will continue in the future. I love you!!

  5. Rudy looks fantastic and that is the most important thing. Time will answer all questions and find the right answer for this little sweetheart.
    God’s love will see you all through.
    {{{{{big supportive hug}}}}

  6. There is a plan.. and you have it figured out. Enjoy every moment!!! That’s all we can do. We are lucky that our little guys have come so far and they continue to do great. Only time will tell what God’s plan is for them. It’s pretty amazing so far!!!

    As far as the oxygen cannulas… Owen has had that up his nose FOREVER!! He’s so used to it that he gets mad when we try to change it. The Tender Grips oxygen dots are the greatest things ever to keep it in place!!

  7. just how good his advice is. When you are stripped of a plan of action, it’s real easy to get caught up in the disappointment and obsess over the lack of a plan…we need to resist this temptation and live life in the moment…loving our kids and believing wholeheartedly that we will navigate through this no matter what. Rolf and I both feel we need to face the harsh reality but do so with deep hope. Whatever will be WILL BE and we have no less control over what is to come than we did yesterday. My mind is adjusting but my heart is slow to follow…our hearts are breaking.

    You understand Rudi’ medical condition and the physical reactions better than all your readers, but just maybe he is striking out on his own. I am so sorry that his lung function isn’t enough to justify the heart operation, but just maybe he knows what he can do for his lung functions by ripping out the tube.
    His siblings are beyond belief in their demonstration of love and care. Blessed is a word that comes to mind, but I wouldn’t want to swell their heads. Best of fortune, Rudi. Not luck or anything close, but if the Lord finds a way that will enable you to prosper, you will walk that path. My own family is great, but I am so envious of the example shown by your parents, brothers, and sisters. Go Rudi, go.

  8. Rolf, you’re like the total MacGyver of healthcare… I know you could take a Croakie or Chums leash, & a ‘hearing aid clip’, and modify them to work as a nasal cannula retainer. Just don’ infringe on the many patented ugly systems already available…

  9. So many well-spoken posters – who recognize what we do too – what a blessing you are to Rudy and everyone else. No pressure in that, just keep on being you and loving so sweetly and deeply. Heard a poem last night at a recitation contest Josh was in and some lines struck me for you:

    Just when it has seemed I couldn’t bear
    one more friend
    waking with a tumor, one more maniac

    with a perfect reason, often a sweetness
    has come
    and changed nothing in the world

    except the way I stumbled through it,
    for a while lost
    in the ignorance of loving

    someone or something, the world shrunk
    to mouth-size,
    hand-size, and never seeming small… (Sweetness by Steven Dunn)

    On another side note, I must say that although you were both good communicators before, this process has only made you more eloquent and shared with and taught all your readers so much!
    We love you!

  10. Thank you for helping keep us focused on what is and what is not important. I will hold my husband & daughters tighter I will be more loving with my words. When I do this I will think of Rudy and how much love is in the world. ALOT!

  11. I have tears in my eyes and prayers in my heart for all of you. I pray for the Touch of God in your lives in a very special way.

  12. Rolf and Trish,
    I was so upset to hear the news of Rudy’s recent cath. It brought back that day in our lives when we were told that the Glenn was off the table. Rudy was always our hope and example of how well one could do with out the Glenn. I know you hoped for much better results as we did and it’s so tough when that doesn’t happen. We continue to pray for Rudy and your family. Our precious heart children are such a reminder of how to live and LOVE in each moment. You guys are never far from our hearts. Prayers are being lifted.

  13. Those are my Rudy Rolls!!! Glad to see them being used for a good cause. Hopeing and praying you get out of this rut.

  14. Those are my Rudy Rolls!!! Glad to see them being used for a good cause. Hopeing and praying you get out of this rut. Can you milk the udder ball?

  15. God is full of surprises and we’re counting on a BIG one from Him. Praying!!! Love , Janie and Joe

  16. Our hearts are heavy with you. Keep on loving those kids as only you can.
    you are doing such a super job, we are proud of you
    we are all praying for more little and big miracles for you all.

  17. Just this morning I was thinking how you do such a great job at loving all your kids with a unique approach with all four of them…Rudy is so blessed to be part of one big adventure in love. Oh! the picture of him loving on his momma is priceless!

  18. My heart is definitely heavy with your news–but it does remind me that NONE of us are guaranteed a tomorrow—and we just need to live our lives here on earth to the fullest. But I will continue to pray for healing for Rudy–and for peace for your family. You sure have an amazing little guy—and he has an amazing family.

  19. Wow, what heaviness that is on your hearts. I can’t imagine that awful feeling. But I do so love the advice to just love each one daily. I heard someone say, each of us have a clock that is wound but once and none of us know when our time will come. We had a staff member at our school (Joe’s age) die instantly this week from unknown causes. No one had the opportunity to enjoy one last hug or share one last moment. You have many more moments, I am sure, so as your Dr said, enjoy them and enjoy your family as long as the clock (and that little half heart) keeps on ticking. We love you! Think of you all the time!

  20. Trish,
    Thank you so much for sharing from your heart. You and Rolf are such an inspiration to me! Please know that my prayers continue for you all daily. Rudy is such a gift!

  21. Dear Trish & Rolf,

    After reading this, I honestly am at a loss for words. There are so many questions to ask God, but I know he has the exact response! As always, and I know this sounds repetitive, I am just praying for peace, faith and strength as you continue this journey with Rudy. These photos are just priceless and you truly are a model of inspiration!!! Next time I complain about something nonsensical, seriously, I will give myself a good kick in the butt! LOL! God bless you!!

    Have a safe Halloween!

  22. Praying for you as you live with many unknowns at this point. It is so much. We sure miss you all. Rudy is blessed to have you as a family. Love to you all.

  23. Everyday, I think about the difficulties and sadness that you have had to endure with this precious child. Yet in it all, I’ve seen two absolutely incredible, loving parents pick up their bootstraps and trudge through the maize of uncertainty and disappointment with astonishing grace. I see you display a strength and courage that can only be by your choice to let God be the blanket of hope to cover your sorrows. Above all things, we pray for “peace that passes all understanding” as you face the future with Rudy who you, and we, love and adore. You are “role models” to us all.

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