As Trish already mentioned, our weekend was a bit surreal. Olivia, Wilson and Max got a huge morale boost by our two days at Disneyland/California Adventure. It was cold and rainy enough that we had to seek shelter a few times, but it also served to keep the crowds away. We watched the kids get lost in the experience, laugh and have fun, try some new risky things (like Olivia and Space Mountain) and come away thrilled. I found myself trying to learn how to feel two very conflicting emotions at the same time; sharing the joy of the kids’ experience while feeling burdened and heavy for Rudy and the struggles we knew he was having over the weekend. It brought us again to a place of feeling very torn–we have a baby in ICU and it kills us to not be there, but in front of us there were three kids who were finally getting some respite from months of upheaval who need us just as much as Rudy does. So I often found myself in a bit of a stupor–loving the fact that my kids were care-free and bouncing around with smiles on their faces, yet troubled that I have a baby in critical health and I’m at an amusement park. Wish there was a guidebook for such things.
Rudy was on a rollercoaster of a different kind and we’re so glad that Oma was keeping an eye on things at the hospital for us. On our way back from Anaheim, we stopped at the hospital to pick her up and drop off Trish. While there we had a long check in with Dr. Rick which brought us back to reality a bit quicker than we may have hoped. This week, there are three items on the agenda for Rudy: A tracheostomy, a gastro-intestinal consult, and a neurological exam.
None of the three terms seem all that warm to us, least of all the first. Rudy has had two very solid attempts at breathing on his own and was not able to maintain things without the accumulation of mucus in his lungs. As all of the conditions were seemingly right for these two attempts, there isn’t much reason to believe trying again in a few days or a few weeks will bring a different result. On top of this, re-intubation is a disruptive procedure which has been shown to negatively impact Rudy’s heart rate, so having a port in his neck to breathe from can give the team more options with the ventilator and allow them to suction the lungs more effectively. It’s obviously an option one hopes not to take, but it is viewed as temporary–as patients grow bigger and stronger they are able to eventually breathe normally. As it turns out, the ENT specialist Rick contacted today and really wants to involve happens to have an open OR window tomorrow (Tuesday) morning at 10, s0 we gave consent to go ahead with this procedure. As part of the process, they do check the trachea and lungs very carefully just to see if there is some kid of physical obstruction which may be causing problems, but Rick isn’t expecting them to find much. We should be prepared for the tracheostomy.
The team is also going to look closely at Rudy’s stomache function as he has had difficulty with every attempt to feed him thusfar. As we spent most of our discussion on the topic above, we’re not sure all that’s involved here, but they do need to get some specialized input on what might be going on here.
Lastly, Rick wants some good imagery done on Rudy’s brain mostly because there is no good explanation yet for the consistent fevers he has. We want to be sure there isn’t any kind of abscess in his brain that might be hiding somewhere. There’s not much evidence of neurological issues with Rudy, other than a tendency he has of looking to his left more than the right–but this could might be more out of habit.
Three pretty big things to grapple with and we were grateful for Rick’s forthrightness and care in explaining them to us. We trust this team and their commitment to Rudy and our family. Very little is known about HLHS and why it strikes, but so far there is no link drawn between it and the incidence of other conditions. From my layman’s perspective, the same steps needed to correct this heart lesion also inflict trauma on a delicate little newborn body. Recovering from them presents quite a challenge. Most readers would have to wonder if we’re going to extreme means to help a little boy who can’t breathe or eat and, having discussed this with Dr. Robert, I took the opportunity to ask Dr. Rick. It’s a conversation you can’t quite believe you’re having about your child, but the assurances we have from both of them are that their plan for treatment still views Rudy’s issues as surmountable and that he will move beyond them. So we cling to that amidst twists and turns on a rollercoaster scarier than we’d ever dreamed.
Please pray for Rudy on Tuesday at 10am PDT as he’ll be in surgery. Trish will be on hand and will post updates accordingly during the day.
14 thoughts on “If only Disneyland had a monopoly on rollercoasters…”
Once again, I am struck by your honesty and vulnerability. Thank you for bringing us all up to date with the latest challenges faced by your beautiful boy. I cannot even begin to imagine how very fractured you and Trish must feel most of the time. Slivers of your selves stretch across the miles between Westwood and Goleta, with not much left for you or each other at times, I am sure. Barely enough energy at some points to offer more than a breath of a prayer, a groan of, “Help me, help, me, help me!” Or, “Help him, help him, help him!!”
After many years of both watching others walk the road of suffering, and walking some parts of it myself, this much I can tell you: I do not know how, I do not know when, but I DO KNOW that somehow, somewhere – there WILL BE redemption in this complicated mess of emotions, seemingly insurmountable problems, technical jargon you must digest and regurgitate to a worried, waiting public, and unending rides on that rickety, unpredictable roller coaster you are are riding, a ride you did not and would never choose to take. The most amazing of all God’s miracles to me is the supernatural way he can take what we suffer and make something new and even beautiful out of it all.
Personally, I do believe we get hit with stuff that feels like way, WAY too much for us to handle. In fact, I would be willing to bet that you said exactly that when you learned of your son’s diagnosis. Unbelievably too much to take. Unacceptably too much too handle. Dreadfully dread-filled, overwhelmingly horrible. Hard, too hard, in fact…impossibly difficult. And yet…here you are, still riding, still taking the heart-stopping downs along with the nerve-racking ups. And somehow, in the midst of it all, managing to take your 3 older children for a getaway treat and even find some pleasure in that. Oh, I hope you can find pleasure in treats for yourselves and for them!! You all need release, relief, refreshment. And that in no way lessens your love and commitment to Rudy. In fact, it makes that love even more vibrant, more poignant, more beautiful. For taking such breaks from the rigors of watchful care can reawaken in you the ability to dream for him, for his future, for your future together. Oh, how I pray for that. Whatever that future may hold for you and your precious family, I do know that God is there, loving you all, delighting in you. So continue to delight in each other in every way you can think of through the haze of fatigue you carry 24/7. Your writing fills me with hope and with thanksgiving, even when it tells me hard, scary news like tonight’s entry. That such writing can happen in the midst of so much pain is yet another evidence to me of God’s grace and goodness at work in this world. So I thank you for your words, for your commitment to honest examination of all the issues facing you and Rudy, and for sharing that commitment with those of us who read this blog each day.
May God have mercy on your sweet son – and on his parents and grandparents and each of his siblings as you all continue to do battle with the queasiness of that up-and-down ride you’re on. We all will continue to raise our fist toward heaven on your behalf, knowing that the Good God of that heaven hears and answers our cries, our groans, our rants of outrage that such a small, sweet innocent person should have to endure so much in his short life. We will also give thanks for brilliant medical technology and loving care-takers who serve as God’s hands in the world of intensive infant care. And we will give thanks for the lovely way in which you invite us to share your life and carry a small part of your load.
Many blessings, many prayers,
The picture of Rudy with the stuffed Mickey is priceless. That’s a definite “framer”! 🙂
I will be thinking about Rudy as he is in surgery this morning. Praying for all of you. Hoping that some questions are answered and that Rudy continues his forward progress.
I am so happy to see that you were able to have an amazing time at Disney with Olivia, Max, and Wilson. I am sure the contrast of emotions can be unbearable at times but from the outside looking in…..I see such amazing strength from your family. In my eyes, you are making great choices for all of your kids!
Amy from CT
Many prayers for Rudy and for you as a family.
Thanks to Oma for being there with our precious Rudy. Dear Lord, please give the medical team great wisdom and success in bringing this little guy progress and healing. And bring peace and rest to all who care so deeply for him. Wish we could be with you today, Trish, but we enfold you in prayer and love. I would “fix it” if I could sweetheart.
I will add my prayers to all of those being offered for Rudy and his surgery today. I also continue to pray for all of your family during this roller coaster ride that you are on. Please give Oma a hug for me!
We are praying for Rudy!! He looks quite shocked at the sight of a large mouse.
Rolf and Trish , my thoughts and prayers will be with you and Rudy this morning. The trach will look a little scary at first but it will make Rudy surprisingly more comfortable and he’ll be able to suck to his hearts content : ) I’m glad you got to spend a great day at Disneyland with the kids they looked so excited and Rudy looks like he loved the Mickey Mouse you brought for him. I’ll check back on the blog for an update later this afternoon. Know that I’m thinking about you.
You continue to be on our minds- good luck today. All you can do is trust the pro’s and hope for the best.
Praying this morning for Sweet Rudy…for all of you…
today extra prayers go to Rudy and his family……….from a HLHS grandma
I’m thinking of you as you struggle to be there for your older kids as well as Rudy. It can’t be easy, yet you are doing a great job. My thoughts are with your family and Rudy today as undergoes surgery.
From a fellow La Patera mom…Erin
I am praying harder than I ever have before for the strength that little Rudy needs. I also am asking for everything to go smooth during surgery and a very quick and progressive recovery. I think of you all everyday and wish I could be there to hold all of you. We love you!! Go Rudy Go!!
I was in the Bethel House office at 7:00 am this morning, reading “Rudy’s Beat. when one of the ladies stood at the door and commented, “you have an amazing, peaceful look on your face.”. I quickly invited her around the desk to see the amazing “angel face” photos of precious Rudy. Praise the Lord.
Perhaps someday, you will be write , “A Guidebook for Such Things”. Catchy title!
How lovely to see Rudy’s sweet little face!! This little guy loves life and dosen’t want to miss out on being with his incredible family. Sending prayers for your angel and and the entire family, Joe and Jane