The evil results of pain can be multiplied if the sufferers are persistently taught by the bystanders that such results are the proper and manly results for them to exhibit. Indignation at others’ sufferings, though a generous passion, needs to be well managed lest it steal away patience and humanity from those who suffer and plant anger and cynicism in their stead. But I am not convinced that suffering, if spared such officious vicarious indignation, has any natural tendency to produce such evils…I have seen great beauty of spirit in some who were great sufferers…and I have seen illness produce treasures of fortitude and meekness from the most unpromising subjects.
C.S. Lewis The Problem of Pain
In the brief time I had back in Santa Barbara prior to Rudy’s surgery, I considered bringing along the above title but thought the better of it; partly because I wasn’t sure I’d have the concentration for thoughtful reading but more because of my tendency to carry six books in my luggage when I probably won’t make it into the second. As it happened, friends Bonnie and Monique came to the hospital with a book of daily readings from Lewis that serves things up in easily-digestible chunks (please pardon the jargon). The readings for October are all from The Problem of Pain so I’ve enjoyed being spoon-fed this wisdom each day.
I appreciate the words above for Rudy’s sake and my own. Trish and I are so blessed to have such a cadre of friends walking with us through this. Our kids see and experience it and I trust Rudy will know it as well. Life on this journey includes lament, frustration and anger, but I have pondered the appropriate place of this. It would deny something very human to suppress such feelings, yet I’ve found little to gain by taking offense on someone’s behalf. I don’t think I’ll ever get to the point where I can be glad for what Rudy has to go through. I hope it won’t be viewed as ingratitude to say that any and all of the blessings received within this time don’t make me grateful for HLHS. I’m not looking forward to conversations in the years ahead where we have to be frank about Rudy’s physical limitations and perhaps explain to him once again that he can’t engage in certain activities. But I don’t want to be angry. I don’t want him to be angry. May the fortitude and meekness Lewis displayed in his own life bear fruit in ours.
The patient vigil continues here in CTICU room 5439. As Trish has already indicated in her post (we’re engaged in a laptop duel this morning), Rudy is making slow and steady progress and we’ve made some adjustments to our own expectations regarding his timeline. While his initial bounce back after surgery got us hopeful that such a pace would recover in his recovery (with the breathing tube coming out sometime last weekend), the pace is not concerning the doctors. They tried to back him off all medications on Tuesday, but decided yesterday that he still needs some to regulate blood flow and kidney function.
In the last couple of days they have rolled in some of the big machines to examine his internal organs just to make sure there’s no damage and everything is checking out fine. They want to make sure Rudy gets enough nutrition so he stays strong and that his body continues to gain strength and not lose weight. The good news is that his creatinine level is down to 1.7 (from the 2.4 range) so the nephrology team is happy. Over the next few days, the team will take things more slowly on the ventilator, turning it down in very slight steps to see how he adjusts.
As I write this, Rudy is wide-eyed and alert. Every now and again, he stretches out his arms and holds up a fist—kind of like a football player does when he’s being carted off the field to assure his teammates he’s OK. Trish and I are would like to remain here together until they free him from the ventilator as that will be our first chance to hold him other than the brief instant just after birth, but we sure were hoping that chance would come this weekend. It looks like we’ll have to wait until next week sometime. At that point, I think the staff can roll his crib out of the room and give it to someone else because I don’t think we’ll be putting him down.
Rudy's Beat 
You continue to be in our thoughts and prayers.
Everyone involved with HLHS lives on an emotional rollercoaster at times. Surprisingly, limitations and restrictions can be minimal as the years go by. My nine year old just started an afterschool karate program, and for years I thought karate was out of the question. While his friends were all taking classes he would get frustrated by our “ignoring” of his request to join. But after talking to the instructor…I’m confident that karate can be a non-contact activity at this level. I pray that someday you will see Rudy trying things that you never thought were possible! These babies do amazing things everyday, which can only mean that they are destined to have amazing futures!
Thoughts and prayers heading across the country to you in CA!
Dawn
Mom to Nicholas HLHS
CT
Rolf, Trish and Rudy,
It seems to us that you are all showing great fortitude and meekness! We know this is a very long journey for you, and please know that we are thinking of you hour by hour! Keep fighting the good fight, dear friends…this will soon be behind you, and you’ll be home with Rudy and your other three cherubs!
Love and blessings,
Lisa and Chris
you are so wise to forgo anger…it’s mostly non-productive, and it’s not a word that comes to mind when I think of you and Trish. take joy instead in returning that strong, steady gaze….what a beautiful boy!
love and blessings, Linda
I come to you by way of Katie Manning and have to say I am inspired by Rudy’s progress. To echo what Dawn said earlier – HLHS doesn’t necessarily mean life as a couch potato. My son had a soccer teammate who had HLHS, went thru every roller coaster event possible through the surgery process and was able to play as a second grader. Keep the faith and trust that Rudy will do what Rudy is meant to – he has already touched a lot of us at Vickie Manning’s school.
You guys amaze me…you really do. You are such great testaments of faith and such great roll models. I love and respect the hell out of you guys. For some reason I keep thinking of that movie “Rudy” and when you said that about his arms being stretch out like he was being carried off of a football field, that just made me think of that even more. Cheesey I know and that Rudy definitely didn’t go through anything to the magnitude that your little Rudy is going through, but for some reason it makes me smile and makes me misty eyed. Ruuuuuuuuuuudyyyyyyyyy!!!!!!
Wow you two are such awesome parents.Rudy has been blessed to have you for parents.Can’t even begin to imagine what you are going through, but I do know that you both are teaching me so much.Miss you both so so so very much. It seems like it has been forever.Thanks for all the up dates.You are continually in our prayers.God bless your weekend.