Changing of the Guard

Well, I’ve had enough of this. I know Rudy’s travails are the focus of this blog, but I had a lousy couple of weeks dealing with my back. I wish I could say my demeanor throughout this has been one of stoic endurance, long opportunities to contemplate the quiet and meditate on God’s word (as a seminary graduate should), but truth be told the last two weeks of back pain have been much like the last nine weeks of Rudy’s situation. We try to be as thoughtful as we can, but one comes to realize it’s more a game of survival–sometimes day to day and sometimes minute to minute; so my prayers aren’t birthed from time set aside for meditation but erupt sporadically in the midst of chaos. Usually a hurried tantrum of four-word sentences (much different than I would write here). Maybe other people can run this at a different pace, but this is mine.

So Wednesday night, I was extremely frustrated after several days hobbling around the house and fighting on my feet just long enough to help the kids before returning to the elusive quest of finding a comfortable position. More than anything, I dreaded the thought of not being strong enough to see Rudy again (it’s been almost two weeks). So, I opened my bible and it landed on Psalm 142 where David hiding in a cave utters, “I pour out my complaint before him. I tell my trouble before him…when my spirit is faint, you know my way…no refuge remains to me” ending with the prayer for a deliverance that can only come from God.

So I took liberty in pouring out my complaints for awhile, taking a chance that David probably elaborated with some Hebrew vernacular that might have been too pedestrian to make it into the Bible. When I think about how much troubles me about this experience it goes far beyond Rudy’s epic struggle to what this is doing to our family and our physical selves as it extends to unknown durations. David’s isolation came through what he wrote and that resonated with me as it’s part of our reality. While on the one hand we are overwhelmed and grateful for the love that surrounds us and the way people have come along side us, I hope it’s not out of line to feel all alone in the midst of it. This is ours to fight. We own it. We’ll live with the outcomes as we live with the day-to-day realities. That’s our lonely cave and I identify with David complaining as he tried to find comfort in the rocks and mud of his.

Long story short, I had a much better night’s sleep and Thursday was a markedly improved day. Give credit to God for hearing prayer, the right combination of pain meds, anti-inflammatories and muscle relaxants and, as those in my office heard me raving A GOOD CUP OF COFFEE (I’m serious–my whole pain scale changed this AM again with my first cup. The days at home where I couldn’t make it to the kitchen to get the brew going all ended up very painful–go figure–Peets rules!).

So I’m just about to get in the car and get my Rudy fix. I’ve come to realize the seat of my truck has about the best lumbar support of any seat we own (yeah, Toyota!) and if the drive gets me too stiff, I know there are wheelchairs right inside the door of the hospital. I can’t wait. Daddy’s coming!

As I’ll only get to see Trish briefly before she comes to be with the kids, allow us a married moment. Honey, we have a new morning tradition here in that we start with the kids opening up their advent calendars to eat the chocolate before they make any decision regarding breakfast. Go ahead and try to change it if you want, but understand the impact this might have on your approval ratings.

Mommy Therapy

Today was a full day…after a challenging day yesterday, Rudy continued to struggle today with an inconsistent heart rate and labored breathing. At one point he broke into a cold sweat and his coloring turned for the worse…it was unsettling to watch him. On the other hand, today’s chest xray showed some fluid build-up in his chest but not enough to need another chest drain so for now he remains tube-less!!! The night team will watch him closely and if his chest starts to look bigger or his respiratory condition worsens, they’ll reconsider. For several weeks now we’ve been battling a triple threat…Rudy’s low thyroid function, the fluid in his chest AND malnutrition. Based on the most recent test results, the thyroid treatment he has been on has increased his thyroid function, his malnutrition numbers have improved and, as I’ve already explained, the fluid is still an issue but getting better so, in general, I think we are moving forward. Why he has struggled so the past couple of days, I’m not sure, but I’m not going to let it distract me from the slow progress he is making and I’m praying that it is just a temporary hiccup.

We did get to add a long-awaited element to Rudy’s treatment plan today…a little something I like to call “Mommy Therapy”! I’ve been unable to hold Rudy all this time mainly because of his ET (ventilator) tube and his chest tubes but because he didn’t have his chest tube anymore, I got the nerve up to ask Dr. Dan if I could hold Rudy joking that my holding him was probably the missing link in his ability to get well. Dr. Dan consulted good ol’ Dr. Rick who gave his okay without skipping a beat and this afternoon I held Rudy (with the help of nurses Alisa and Amy) for about 45 minutes! It was wonderful and you know what? During the entire time I held him, Rudy was calm and his heart rate didn’t dip once…maybe I AM the missing link!!!!! Ha Well, this special moment just happened to be taking place while the doctors did their afternoon rounds so Dr. Brian stepped in briefly to see what was going on…as he turned and left the room he said, “That made my day!”. You can bet it made mine too!!

I’m so sorry Daddy wasn’t here to share in the moment but maybe he’ll get his turn next as he is feeling a bit better and is planning to make the drive down tomorrow. Today was another day filled with lots of different emotions but it is ending with a baby boy resting comfortably in his crib and a Mama by his side with a full heart!

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A Special Visit

Now, I don’t want to take away from the “specialness” of any of the visits we’ve had from friends because we sure appreciate those who have come to meet our little man but yesterday’s visit from Grace was particularly sweet. Gracie and her husband Marlin are dear friends of ours from the “San Diego” chapter of my life and we have enjoyed watching their family (which includes Nate, Josh, Luke and CeCe) do life together for the past 18 years. Rolf and I have not only enjoyed their friendship all these years, but we have also appreciated their example of loving Jesus, serving the community around them and, most of all, in raising a family that does the same.

Because of our deep love and respect for the whole VanNortwick family (affectionately known as the Van Clan), we’ve asked Grace and Marlin to be Rudy’s godparents. We started the tradition of “adopting” godparents for our kids when Wilson was born in the hopes that these dear friends would commit to pray for our kids, to be an extra source of counsel, love and encouragement in their lives and to help us be better parents. For that reason, we chose friends who are all at different stages in life bringing with them a variety of unique life experiences to speak into our family’s life. It has been a rich experience for us to have these dear friends (some close by and some far away) a part of our extended family. So as we honor Rudy’s godparents on “Rudy’s Beat”, we take time to thank all of you as well for your investment in our family – especially during this amazing test of endurance and patience…for your sacrifice of time in reading the blog and in praying…AND for your cherished friendship!

The Gallery of Godparents…

Chest Tube-less for a Night!

‘Got a glimpse of Rudy’s precious cheeks today during a vent tube tape change…made me want to climb up into his crib and snuggle those yummy cheeks! Well, Rudy sure had a hard time settling down today. At the time of my last post this morning, the RT and his nurse were monitoring him closely after an episode where his heart rate plunged and his breathing was quite labored. They suctioned his ventilator tube which normally helps calm him down but today he continued to struggle for his breaths. They then tried to sedate him a bit but that didn’t help either. Dr. Rick came in, examined him, and ordered an x-ray. The x-ray showed that his chest tube was not positioned correctly and about to come out. He felt the best course of action was to remove the tube and see what happens to the fluid in his chest overnight…he wants to give Rudy the night to work some magic and possibly absorb the fluid proving that he doesn’t need the chest tube anymore. If the fluid does build up again then they will put a new, fresh chest tube drain in tomorrow. So he’ll be chest tube-less for one night at least. It goes without saying, though, that it would be WONDERFUL if the fluid found its own way out of Rudy’s chest. The medical team was in and out a good bit all day and my dear friend, Grace, asked “Is it always this busy in here”. Nope, not always…

Happy 9-week Birthday!

Poor thing! Nurses Gladys and Angeli and I turned Rudy into our own version of a “Build-A-Bear” elf yesterday while I nervously awaited the call for transport to the cath lab. I was actually feeling very relaxed and confident most of the day…there really wasn’t any reason to be nervous but there was an adreneline rush let down after-the-fact which made me realize I was a little wound-up.

Yesterday was also a big day for our friends, the Elliots. Their little Logan took up residence in the CTICU 5 days after Rudy so we had 8+ weeks to bond with Rayme, Brett and their family while Logan was successfully treated for a serious heart condition. We celebrate their discharge yesterday and since they are fellow Santa Barbarians, Rudy is looking forward to many playdates with Logan in the future. Congratulations Logan!! We miss you but are so thankful for your progressing recovery!!!

Rudy is 9 weeks old today. His hair is starting to lighten and curl up a bit on the ends. It makes me wonder if he will have ringlets like Wilson or wavy hair like Max. He slept comfortably last night and was alert early this morning. Given the results of yesterday’s heart cath, the plan is to start weaning him again off the vent. They started very slow this morning taking his bpm down to 30 from 32 – not a huge change but he doesn’t seem to be tolerating it very well right now. The nurse and RT are standing at his bedside monitoring him closely until he settles down. Boy, is he agitated! (Much like his Daddy who is at home still unable to find a comfortable position to get some much needed rest).

So, we continue to wait for that breakthrough in the fluid flow and in his ability to wean the vent. The numbers that chart his nutrition progress are on the rise so that’s a plus. I’ll let you know how he’s doing later this afternoon…

He’s Back…

It’s 6:30pm and our little man is back safely in his room…tucked snugly in his crib. It went well…Dr. Dan called me from the lab when he finished to tell me that everything looks good. The good news is that things look good for the Glenn surgery…the bad news is that everything looks good and there isn’t anything they can “fix”…no, actually, that’s good news too it just means we’re back to waiting with no real answers as to why he isn’t getting better faster. But those are considerations for tomorrow…right now, I’m just glad he’s back and we’ll focus now on getting a good night’s rest.

It’s Happening…

It’s a little after 5pm and the procedure is happening now. I left Rudy in the Cath lab sedated waiting for Dr. Dan who was addressing an emergency in the CTICU. Turns out the emergency is in the room next door to Rudy’s so when I got back to Rudy’s room I was able to wish Dr. Dan well as he headed down to Rudy…a few minutes later he was back up tending to the little baby girl next door (please say a quick prayer for this precious little one who has the same condition as Rudy) but he is now back down with Rudy again so things should be underway.

If Dr. Dan does only one catheter, the procedure should take about 90 minutes. If he sees something in the first go around that warrants a second catheter, then the procedure could take 3+ hours. So, I’ll post again later tonight when Rudy is back safe and sound.

Dr. Gary Satou just stopped in to say he was going to go down and check on Rudy! -Sweet guy!!!

3:20–off to the lab

Trish just called to say that they came to pick Rudy up for the cath procedure. He’ll be sedated and then Dan Levi will go with a scope up through an artery in his groin to his heart so they can get a very detailed look at all that’s going on there. It’s a relatively safe procedure, but we’re praying for Rudy and that there might be something Dan sees which might indicate why he isn’t moving off the plateau he’s been on. More updates to come…

It’s another Monday…

…but I’m starting out this Monday more encouraged than last. You might recall my concern (or maybe just my weariness) last week at the weekly staff changes that seem to bring with them changes in Rudy’s care plan that leave us feeling like we’re in the middle of a ping pong match. Well, maybe the changes aren’t THAT “back and forth” but even the subtle changes from week to week can get confusing after a while. Anyway, I came back from breakfast to find Dr. Rick in charge this week and, although all of Rudy’s doctors are great and I shouldn’t have favorites, Dr. Rick is one of my favorites. (I can post that because I don’t think he reads the blog! Ha) Simply put, he is comforting to have around…I don’t know what it is about him but he is always so calm and measured, never in a rush, always stops in and conducts a physical exam on Rudy himself…so tender with him and, most of all, seems to appreciate our ever-growing menagerie of artwork and knick-knacks always taking the time to look around…next time he drops in I have to remember to show him the dancing Christmas tree!

I also got a chance to talk with our surgeon, Dr. Brian, and the cath-man, Dr. Dan, (also favorites) so I feel like I’ve had face-to-face updates from the men in charge and that is always reassuring. So, where do we stand now? Not a whole lot has changed in Rudy’s condition but when I got back to him last night after the long weekend, he seemed better to me…his color was good and he wasn’t as fussy. He has battled a fever off and on all weekend so he has been on antibiotics, his fluid output is slowly decreasing but not yet enough, his nutrition numbers are climbing so that, too, is slowly inching to where it needs to be. All the indicators TO ME say we’re moving everso slowly forward and it is still a matter of time. But as Dr. Rick put it this morning, “there’s no known reason why he shouldn’t be thriving and off the ventilator now”. That said, Dr. Brian and Dr. Dan feel strongly that a heart catheter is the next step and they have scheduled that procedure for tomorrow (Tuesday). The information they can get from the catheter is something they will need in preparation for Rudy’s second open heart surgery in about 4 months (called the Glenn) and doing it now might shed some light on why he’s not progressing. Dr. Dan will conduct the procedure and he just finished drawing me a very nice picture of what he’s going to do on my whiteboard! Although Rudy’s heart function looks great on all the echos (ultrasounds of the heart), there could be something they are missing. I’m feeling okay with it especially since this is a procedure he’ll need in a couple of months anyway but I wish he didn’t have to make another trip downstairs as that trip is always so labor intensive. I trust that the docs are covering all the bases in their search for just the right balance of everything but I can’t help but think over and over that God knows exactly where the hold-up lies in terms of Rudy’s progress and I’m praying fervently that God will intervene by giving Rudy’s system a gentle kick in the pants to jump start whatever needs to get movin’. How do you like my technical analysis and action step? I’m off to lunch but will update later if I get more detailed information on the plan or it somehow changes!

P.S. It’s December 1st…Happy Birthday Grandma Jo!!!

Getting our bearings

Forgive us for not posting for a couple of days. So glad Rudy’s Beat has some dedicated subscribers who get concerned when there’s no news. No big developments in Rudy’s condition. He’s had some fevers, indicative of infections common to such a long hospitalization. The fluid from his chest tube seems to be decreasing so that’s positive. For now, there haven’t been any major setbacks so that in itself is progress.

By definition a journey like this is disorienting. Life these past months has been dictated by circumstances we didn’t choose or plan for, so we’re always in a state of reacting. Over the long Thanksgiving holiday we were forced to slow down a bit and re-chart the course. As Trish mentioned on Thursday, my back has taken me out of things so it seems that no matter where she is, Trish has to deal with incapacitated bed-ridden babies. While I’m still uncomfortable, I am hoping that I’ve achieved the right balance of rest and medications that has me headed in the right direction.

We said good bye to Oma on Friday, who understandably had a tough time pulling herself away. It was such a blessing to have had her and Opa here for such a long time but, if we’re realistic about how far we have to go from here, there will no doubt be other places where we’ll need extended support.

Today is a beautiful Sunday in Santa Barbara and Trish and I are preparing for this week’s deployment. She’ll head back to Rudy this afternoon as it’s been killing us to be away from him for such a stretch.

This morning, I really am burdened for Wilson, Max and Olivia and what this process is asking of them. To make sure the next holiday doesn’t sneak up on us like Thanksgiving did, we took time yesterday to put up the Christmas tree and some decorations. While Olivia and Max got caught up in the moment and happily hung ornaments, Wilson had a hard time gearing up his enthusiasm as he realizes that, barring a rapid change, our Christmas will include time at UCLA. Wilson tends to foresee things a bit quicker than the younger two–he already knows we’ll say good bye to Mommy for the week when she leaves in about an hour and is brooding quietly around the house , while Livy and Max are still blissfully unaware as they swing from the avocado tree. They’ll compensate with a much more dramatic display when they see her getting into the car.

These are just some of the challenges that come with the reality we’re living under and, as Trish wrote Thursday, it helps us to focus on the thoughtful actions of people around us who carry us through. Sure, I would have loved a picture-perfect Thanksgiving with Rudy and extended family all under one roof, but just because it didn’t happen, I wouldn’t want to forget the thoughtfulness of others that was so present during our weekend:

For nurses who humored our constant calls to check on Rudy; for Kathy for sitting with Rudy yesterday when we couldn’ t be there; for neighbor Mike mowing my lawn; for friends like Katie and Brandon who invited Livy and Wilson over to play; for neighbor Eric playing catch with Max; for Greg and Kim having the kids over for fun play; for Noelle taking the kids to church; for the team of people who’ve taken slots to watch the kids after school each day of the week and for those who keep us well fed.

We echo our kids’ oft-expressed desire for life to return to “normal”, but in the absence of that, remain so grateful for the little things that make the disorientation bearable.

PS–I wonder how Greg Lawler survived before finding subjects as photogenic as our family. Wilson and Max think it’s pretty cool to be on the web. I’m just wondering why he hasn’t called me for a sitting yet.