We slept last night like we haven’t in awhile. We got to bed around 12:30 and even though we popped up a few times during the night, we were awakened at 7:45 by the kids calling before they headed off to school. I called over to check on Rudy and got a report that he had held steady through the night and was doing OK, so we took our time eating breakfast and getting ready to come over.
Trish woke up hoping that today would be a tearless day, but unfortunately that quickly wasn’t the case. Not long after we got to the CTICU, we heard word from her family in Kansas that her father’s diagnosis is Glioblastoma which could not be fully removed and is not curable. After the way last night ended with Livy begging us to come home, it added another place to those we wish to be: with Rudy, with our other kids, and now in Kansas with Trish’s family. Please continue to hold up Trish’s family in prayer – her parents, Dick and JoAn, as well as her two older brothers and their families.
The hospital staff quickly became aware and though we got quite a bit of empathy and kindness. It’s weird to be the hardship family everyone might talk about in the break room—did you hear what else happened to them? It can make one wary of tomorrow, but it seems the best way to make it through this is to wear a kind of emotional hospital gown. You try to keep it buttoned up at first and make a good appearance, but after awhile you let the flaps fly open and don’t really care anymore who sees what. There are powerful emotions on this journey. Trying to stuff them could likely make you crazy.
In the midst of all this, Rudy is a superstar and has become an unabashed favorite among several of the hospital staff. Maggie the Cardiology Fellow likes to give a “Rud-ee! Rud-ee! Rud-ee!” cheer when she comes in to see him. Everybody thinks he’s really handsome and the medical folks say he’s a model patient. His vital signs continue to be perfect and every set of labs is progress in the right direction. The big concern today continued to be that he would start peeing regularly. Last night, Dr. Nita realized she was coming in so often to check his little tube that she finally just laid down on the chair bed in our room to save herself the walk. The kids were a bit taken aback that we told them they should pray for that today (Wilson preferred we refer to it as urinating—probably makes for a more proper prayer if one must actually ask the almighty for such a thing). Every doctor that came by this morning looked intently at the tube leading down to the foot of his bed as they came through the door. Finally this afternoon, the diuretics did their stuff and Dr. Harrison (the ICU attending) said it was time for dancing in the street.
We went out to do some shopping, the most important errand being to get Rudy some socks as his feet sometimes get cold. He’s got them on now and we’re torn as to whether his feet are cuter with them or without them. They backed off the paralytics this afternoon as he’s progressing very nicely and they’d like him to be able to move a little bit as this would prevent fluid from amassing in his tissue. Among the “preparing us for the worst” items yesterday was the likelihood that he would be very puffy until they could get all the fluid to properly drain from his body, but that hasn’t been the case. Especially now that he’s peeing, he looks leaner than he did in the birth pictures. Dr. Reemtsen says that if he keeps progressing at this rate, they’ll close his chest on Thursday for sure as they have left it open to facilitate draining and let swelling go down. Don’t think I mentioned that detail—we learned of it during our first consultation here at UCLA. It’s not as bad as one might think, though Trish hasn’t been curious enough to look. There’s a mesh over the opening and then what looks like yellow plastic wrap over the top—but they assure us it’s a very tough material.
The coolest thing about them reducing the paralytic drug is that he can open his eyes now, so as I sit here looking at him he has them lazily open just a bit. When we come close, hold his forehead and start talking they slowly open up to about halfway. If one looks long enough and close enough, every so often there will be the slightest movement of his mouth and tongue. I wonder if he’s getting tired of having his nutrition by IV and wants to get some of the real stuff. It’s pretty easy to hover over him for hours and just watch, but we also need to let him get his sleep.
It’s almost 11pm and we should head off to bed for some real sleep, even though it is so peaceful right here with Rudy I almost want to bed down here for the night. Monina is tonight’s angel so we’ll rest easy. Thanks, Jesus, for guiding our little boy today. As today was such a day of extremes in our family we’re learning to embrace the good with the bad and trust God’s hand in both.
Rudy's Beat 
Good Morning, dear Rolf, I have had a chance to read your messages. The ICU closes from 6:30 to 8:30 so I am forced to leave. The nurse encouraged me to get some sleep so Steve and I came home to their place. How I wish you and Trish had such a home away from home. Steve and Michelle are so good to me and the kids bring some levity to the scene.
Dad had a lot of pain in his head all afternoon after surgery and that did notsubside until they were able to give him a shot at 6:00. He was alert and very cognitive and his memory was great. Dick insisted I get some rest and hopefully he could sleep. His nurse is in and out.
I did sleep and feel rested this morning. I will go back at 8:30 when the ICU opens and plan to stay the rest of the day. I will call later to see how you are doing. Love to all,.
Oh…Geylings…We Christophers are praying, and praying hard. With you in Spirit! Keeping CA folks in the loop and praying with you too.
My dear Trish and Rolf,
I can so relate to your comment about repeated hardship making “one wary of tomorrow”. We have walked just a tiny bit of that journey as well. A little further down the path now, however, we have also experienced the grace, goodness and “keeping us-ness” (not even a word) of our God. Know that He will keep you too as you walk through yet another valley with Trish’s dad. Again, you are in our prayers.
-Lori
Lots of love and prayers coming from Kentucky!!
Good morning so gad to hear that Rudy is doing so well. Trish’s dad is in our prayers.So sad that you you are going through so much, but very blessed to know that you are in God’s care and that he will see you through all of this. Give Rudy a hug from us and to both of you toooooooooo!!!! Isaiah 49:15-16
Trish and Rolf,
Know that Rudy and you are in my prayers. We have been praying for you all for sometime here at NCF, which I am priviledged to work with your brother Steve. I know the Lord works in amazing ways! Thank you for the updates you are providing on this blog! You will continue to be in my prayers. Blessings!
Dear Rolf and Trish,
Though I recieve, read, and cherish “Rudy’s Beat” everyday, I have been left absolutely speechless, afraid to say the wrong thing; somehow presume that I have any real idea of your moment to moment emotional and spiritual journey.
But this morning, reading how much you were looking forward to reading the posted comments last night, so graciously embracing all the support, God removed my fear and my pride, and inspired me to go for it.
I love you all and I have never prayed so faithfully for anything… thank you for that, for the reality that I do trust God enough today to put Rudy, and your WHOLE family in His hands, absolutely.
The ladies at Bethel House ask about you constantly. Your battle has given them all something to care about.
Sincerely, Kathleen
What a blessing that Rudy is responding so well. I will keep your Dad in my prayers Trish and I’m so sorry for all that you guys are going through at this time. I’m so grateful for this blog and it is great to see the photos of all three of you. Rudy is a handsome little guy! I love you all, Kelly
Dear Trish and Rolf,
Your “Urologic Cousin” is very happy to hear Rudy is peeing…always a good thing!
We continue to pray for your family.
Glad to see Rudy is progressing so well. Our prayers continue for the whole family. Please let us know if there’s any way we can help Olivia through this…
Like Kathleen above I have hesitated to intrude with any comment. We just pray. But with your facing such big life issues I can see that you are on Holy Ground Zero. We do not want to tread on His territory but know that every prayer human minds can think of for you God is hearing. He will translate our groanings and yours to His ultimate good. You are, indeed, not alone in this walk. Bless you all, Trish , Rolf, Wilson, Max, Livvy, Rudy, grandmas and grandpas. Hundreds, if not thousands, are praying for you all.
“Ruby’sbeat” is the first thing I check in the mornings. It is so heartening to have the chrnonicles of Rudy be on such an upward spiral. “Thank you”, God. My prayers are constant and I know He hears them. Rudy, thank you for your perseverance and helping to increase my faith. (Rudy, by the way you picked a great family to be born in to.)
What a week this is for you. I saw Max and Wilson this morning, they looked good, and said hello with their usual cheery greeting. I didn’t get to see Olivia before she got into class. We are praying and hoping all goes well for your whole family, I am so sorry to hear about the diagnosis for your father. I can’t imagine how torn you must feel. Do you have a video camera? Video is such a great way to help with long distance communication when there are limits on how much time you can spend with people. Know we are here, hugging you and the kids every day, supporting and praying. Keep on rubbing that beautiful foot, and give eskimo kisses every day!
Good morning Trish & Rolf,
We’ve been lifting your family up continually. I wanted to share a verse I found a couple years ago when doing a study on “Meditations on the Person of God”. It is from Deut. 33:12 (Moses final blessing) says “The beloved of the LORD shall dwell in safety by Him,
Who shelters him all the day long;
And he shall dwell between His shoulders.”
I just imagine God holding us right up to his chest with His arms wrapped around us.
This is what I’m praying you…that you would feel the Lord pulling you close and sheltering you in the midst of all that you’re up against.
Hugs, Becky