Happy Thanksgiving!

Happy Thanksgiving dear friends and family! Now, I don’t want to dwell on the negative but I do have to admit that I woke up this morning pretty ungrateful…I was having a hard time mustering up a thankful heart. All I wanted for Thanksgiving was to have my whole family together…I wasn’t asking that it be on my terms at home with a big, fancy dinner…Rudy’s room in the CTICU would be fine as long as we were all together. Well, I knew at about 6pm last night that that wasn’t going to happen when the chiropractor instructed me to take Rolf directly to the ER because his back pain was so intense he couldn’t administer his treatment. Off we went to the hospital in Goleta…

It was clear once we got Rolf home and settled for the night that he wouldn’t be riding in a car to LA the next day. So, this morning Max, Livy and I loaded up the car for our day away and left Rolf and Wilson to fend for themselves at home. I was heartbroken as I drove away and just, plain mad that the day was unfolding the way it was.

We arrived to find Rudy awake and alert with Oma by his side. We got the quick report on Rudy from nurse Carina (things are about the same, by the way) and the kids settled into “Rudy’s room routine” all too quickly with great familiarity…put down bags, wash hands, put on antibacterial gel, pat Rudy on the head, play with his crib toys, draw on the white board, get out books and game boy, draw pictures, etc, etc…

And then a sweet thing happened…I read my devotional for today and this quote jumped out at me “Let thankfulness rule in your heart. As you thank Me for blessings in your life, a marvelous thing happens. It is as if scales fall off your eyes, enabling you to see more and more of My glorious riches.”. My heart broke again…I’ve loved Jesus for over 35 years and today was the first day I can remember that I chose to wake up and NOT see ANY of God’s goodness…and I mean NOT ANY! I know better (!) so I started my list and like scales falling off my eyes, the more I listed, the more of God’s glorious riches I saw. I obviously have so very much for which I’m thankful but sometimes disappointment can get the best of us and we fall victim to the things in life that try so hard to steal our joy and feeling of hope. I’m ending the day very different than how I started it…I’m sitting at my baby’s bedside thankful he turned 8 weeks old yesterday, thankful too for the amazing Thanksgiving feast we shared with the staff, residents, volunteers and homeless guests at the Rescue Mission yesterday, for our friend Cesar who got to go home yesterday, for Oma who so generously gave us the past 8 weeks of her time and energy to help in the wake of Rudy’s arrival (we’re going to miss you Oma!!), for the simple joy of decorating Rudy’s room today with Christmas lights and the dancing Christmas tree, for Wilson making his dad a grilled cheese sandwich for lunch after calling me for step-by-step instructions, for our dear friends whose surprise visit today brought so much encouragement, for Wilson, Max and Olivia who are weary but persevering in our journey with Rudy with great understanding and for Rolf who makes me laugh through tears…making life a little less heavy! Oh, you get the picture…my list is endless and the night nurse is about to start her shift. It’s time to leave. We’re off to Santa Barbara for the weekend to take care of Daddy and trim our own Christmas tree…Rudy will be in good hands for a couple of days! As always, thank you for loving our Rudy so much and supporting our family through your prayers…something for which we’re ALL thankful!

A Quick Trip Home

I’ll be heading home to Santa Barbara early in the morning so our family can attend the annual Rescue Mission Thanksgiving Feast together. We’ll get our fill of turkey and stuffing tomorrow and then we’ll all return to UCLA early Thursday morning to spend the holiday with Rudy! There will be alot of back and forth between Santa Barbara and LA the rest of this week but I’m excited for our family to spend it’s first holiday all together. The ICU staff is going to have a potluck on Thursday to which we have been invited so we’ll enjoy some fun with our newfound friends that day as well.

Rudy slept most of today away…comfortably with little pain medication. He battled a fever yesterday and this morning so he’s back on antibiotics but, all in all, everything else is about the same. Have I mentioned lately that his heart function is great!? Ironically, all the setbacks and complications he has had haven’t been related to his heart which is encouraging to me from a “long term” perspective. If we stay here much longer, he’ll be ready for the second open heart surgery known as the Glen!!!! But, let’s not get ahead of ourselves…

On the eve of his 8 week birthday I’m struck at how vivid and blurry the past two months are in my mind…at how exhausted and energized I am…at how hopeful and discouraged I feel and at how thankful I am in the midst of it all! There are a ton of conflicting emotions swirling around but at the end of the day, I look over at the little man in the crib beside me and am amazed to be mom to such a special baby boy.

Chipmunk Cheeks

I’d like to report that Rudy’s chunky cheeks are due to him packing on the pounds but they’re actually a product of the steroids he’s on! Not much changed in Rudy’s condition today…he was more alert and awake most of the day which was good to see but he was also upset (doing his silent cry) most of his waking hours which was hard to watch. I’m not sure what to report…on Mondays there is a “changing of the guard”, so to speak, when a fresh medical team takes the reins for the week. As a result, Rudy’s condition and course of treatment are seen at the start of each week with a fresh set of eyes which is good but it can also be a little confusing when perspectives differ from one attending doctor to the next regarding what direction the treatment could/should go. For now, Rudy is holding steady with full support and no feeds to his gut but there was talk today of agressively pursuing extubation again this week which contradicts the plan over the weekend to not sprint or wean him off the ventilator for another week or so. ‘Not quite sure what will transpire this week but we’ll continue to ask our questions and try to make sense of all the medications and lab tests…the positive and negative numbers…the c.c.s and various kinds of fluids we want and don’t want, etc… And, of course, in the midst of it all, we’ll not forget to love on our little chipmunk while praying for a breakthrough!!! 🙂

Ok, The Start of a New Week!

It’s Sunday night and Rudy and I are getting ready to bed down for the night after a day together with family. Rolf, Oma and the kids just left to go home to Santa Barbara. We had a good afternoon together watching football (Go Giants!) and a movie at Rudy’s bedside. The kids hadn’t seen him for a couple of weeks so it was good to have them come down even if it was a quick turnaround.

Rudy’s condition hasn’t changed much. The weekend team had to stop the feeds to his stomach as his midsection got quite big and there was concern he wasn’t tolerating the nutrition. I don’t think this is so much the concern anymore but they have decided not to start the feeds back up again. The strategy, simply put, at this point is to pump him with a bunch of calories intravenously and eliminate any calorie-burning activity i.e. feeds, sprints off the vent, etc. (for maybe a week or so) in hopes that he will gain strength. So, for now the doctor’s orders are for Rudy to spend Thanksgiving packing on the calories while lounging in bed! Not bad!!

A “promise of progress” does seem to renew itself with the start of each new week and, in light of that, I pray for reassurance this week eventhough the pace of this journey seems to be slowing down even more.

Road Trip to Rudy

Probably won’t have much time for a post today as we’re loading up the kids and driving down to see Rudy for the day. We had a couple of “normal” days at home. Trish slept most of Friday and I went to a chiropractor for the first time in my life. It helped…I think.

Friday night we went to the Parks and Rec flag football playoffs to cheer on Max. They won in the first round (which brought encouragement and satisfaction for the kids), but lost in the second (which brought encouragement and freedom for my weekend). So, Saturday I raked the leaves off the lawn (which felt refreshingly normal), picked some avocados and then helped Wilson and Max fabricate a practice dummy for their sword skills. While most of our community focuses on preparing for earthquakes, mudslides, floods and fires, I have to ask if anyone is preparing for hand-to-hand combat. Whether they be marauding Orcs, Storm Troopers, Pirates, Trolls or Goblins, they dare not come from the north. Sleep soundly, Santa Barbara, Wilson and Max have honed their skills and will see to it that no foe sees the other side of Fairview.

Thanks for all the comments on Greg’s Pictures. Loved the poem a new friend posted on seeing them. I have wondered about the strength Rudy has had to discover far sooner than most people do, but love to think of his smiles underneath all of that tape.

Rudy’s world in pictures

Greg Lawler posted a picture album from his visit with Rudy. Check it out!

Pacing for a marathon

Thanks to everyone for your concern these last few days. I think we know what it means now to “hit the wall”, but Trish and I have enjoyed some good rest. Oma is taking a shift at Rudy’s bedside so we’ll try to maintain a slower pace for the next couple of days. We certainly know the importance of “taking care of one’s self”, but there’s just no way to go through this without being stretched.

Rudy is stable. The general indicators are that the fluid drainage is decreasing. The strategy has included increasing feeds to his stomach (you might recall these were suspended several weeks back due to the NEC concerns with his intestines), but part of why this whole process may be dragging on so long is simply malnutrition. While the calories from TPN coming intravenously are good, food coming through the stomach makes for better caloric loads. After he did well on pedialyte yesterday, they started some high octane formula yesterday evening and are watching carefully to see how it processes. His tummy is puffy, but there are good bowel sounds and movements (he’ll really enjoy reading this when he’s in high school).

In case you haven’t found them, Greg Lawler posted some cute pics of Rudy yesterday and today. Check them out here and here.

Last Night Vacuumed!

Thanks to our friend Susie, our kids learned long ago the old Krehbiel trick of using the word “vacuums” in place of the word “sucks” when expressing displeasure about something. It can make for an awkward moment as it did the day we drove the family around Santa Barbara for the first time when Rolf was considering the job at the Rescue Mission. As we drove around the downtown streets, we asked the kids what they thought of the place and Wilson replied with a foggy stare, “Santa Barbara Vacuums”. I jumped on him pretty hard emabarrassed by his disrespect when he said “No, look Mommy, it’s that shop over there”. Ah, he got me!

Well, if you excuse the expression, last night vacuumed! The day started out much like Tuesday with Rudy doped up and asleep most of the day. Greg, Macey’s Daddy, came by for a visit laden with his camera gear to take cool pics of Rudy and I took a long walk around campus on what turned out to be a hot November day in So Cal. Things, though, in the late afternoon took a turn for the worse but not with Rudy…this time it was with me. I was discouraged by the end of the day as the fluid draining from Rudy’s chest tube INCREASED significantly rather than decreased after Monday’s surgical procedure to ligate the duct. More than 120 ccs drained in a 12 hour period which was more than double what it was before the surgery. In addition, the team wasn’t sure what kind of fluid it was…there seemed to be uncertainty and concern which sent my head spinning. By dinner time, I was feeling sick and dehydrated. Long story short, I ended up in the ER around 10pm with the help of my friend Kathy, headed back to Rudy’s room exhausted at 4am and slept through the shift change this morning until about 8:30am! I hit a wall as did Rolf who was laid out at home with his recurring back pain while on the phone with Kathy getting the update on me! The whole crazy night was just a reminder that this is stressful and can manifest itself physically. So, my plan is to go home today and rest with the family for a couple of days.

The good news is today is a new day. I woke up tired but better and Rudy’s output does seem to be decreasing (although we really need to wait 24 hours to compare). He remains on full support on the vent and they will start the sprints up again next week along with some feeds of special formula to his gut. For now, though, the plan is to let him rest over the weekend. He has his big jowls again which make him look like a grumpy old man but, frankly, I wouldn’t blame him if he was a bit grumpy! J

God’s fingerprints have been all over this journey and I’m blessed by them even more in the midst of the challenges… thank you for continuing to be a vital part of God’s provision of grace during this time. Love to you…from a sleepy CTICU.

Hail, Cesar!

We were so excited to see the wait for a donor heart come to an end last week for Cesar. As he battles back after his transplant in the room next door, having learned the hard way that In-N-Out and Burger King might not be the best in post-op nutrition, here’s more of his story:

There’s a regular shuffling of the chairs between rooms here in the CTICU. If we find ourselves short, I check through vacant rooms to see what I can find. The nurses tend to be concerned for our comfort and often lead the search for a nice rocker or recliner if we look like we need it. While our stay is approaching a length to where we feel enough ownership over this room that we might repaint it, there’s no dibs on the furniture and if the nurses need it, they have no problem coming for it.

I remember coming in one morning the week before Halloween to find that all of our chairs had been cleaned out. As I set off on my quest, a nurse explained that several family members of the newly arrived patient next door had spent the night and needed lots of chairs.

Introductions between neighbors in the ICU tend to be slow in coming. Most families come in shocked and are so focused on what’s going on with their child that there really isn’t much attention left to be paid to meeting the neighbors. Many kids are only in the unit for 2-3 days until they’re stable enough to be moved to the floor, so it usually takes seeing the same faces for about five days before one gets introduced and acquainted.

For about that long, I noticed a steady stream of people coming and going from the room next door. Walking by, I caught glimpses of the tall kid laid out on the bed with the usual tubes and hoses. Like most patients, he came in here in pretty rough shape but after a few days I noticed his eyes would be open and he’d be holding court with nurses, doctors or the guests that always seemed to be visiting.

Our formal introduction came on Halloween, when Cesar came rolling down the hallway in his full Batman costume pushed by Liz, his older sister, as he wasn’t going to miss out on the festivities. That evening, I think there were close to a dozen people in his room watching videos and playing video games (Cesar came prepared with his own Playstation). While Rudy wouldn’t know Halloween from any other day, we were missing our kids a great deal that night so there was something comforting in seeing family and friends making sure that our neighbor wasn’t going to miss out on a memorable holiday just because he was in the CTICU. We stopped by as we left sometime after 11pm and were met with expressions that said, “What, you’re leaving already?” Cesar declared that there would be pizza arriving shortly, but since he stopped short of an edict, we begged off and got some sleep.

In the days following, Cesar went for walks about twice a day and always made a point of stopping in. We, in turn, stopped by his room a couple times a day. Through this, we learned that Cesar was also born with Hypoplastic Left Heart Syndrome, went through the Norwood operations and then needed a heart transplant at age 12. He was back in the hospital because he was rejecting this heart and was going to need a second transplant. In learning his kinship with our son, Cesar visited Rudy’s bedside, looked him over and with the authority that comes from experience said, “Rudy’s gonna do really well. I just know it.”

I suppose it’s natural to lament one’s own circumstances, but life in the ICU shows us that there are different flavors of agony and I often walk away from conversations feeling deeply for what people have to face and thanking God for what we’ve been spared. For Cesar and his family, the burden was an angst-laden waiting game. On the one hand, they would have as little as five hours notice before surgery; on the other, the wait could be as long as six months for a donor heart to come available. However long it took, Cesar was going to be in the hospital until a match was found.

In order to survive extended stays in the ICU one is wise to learn from the example of others, so we are so grateful for Cesar and his family. Enrique and Maria amaze us in their ability to extend themselves in maintaining work and family. While Santa Ana is within the LA area, there are likely times where traffic makes the drive about as long as the one from Santa Barbara; yet they are here almost every evening, even if it means driving in late after work for just a couple hours to be with their son. His older sisters, Angie and Liz, are blessed with looks and charm that most likely keep their dance cards full, but they’ve taken an inordinate number of shifts at his bedside keeping him company. While we don’t like for Rudy to be alone here, it seems even more pressing for kids who are more cognizant of their surroundings. So I am amazed at the lengths they go to in making sure Cesar has company.

But most moving is Cesar himself, who goes beyond simply having a positive attitude to embodying a defiant joy. He’s quick with a welcoming wave through the window. Even though his walks down the hallway are slow and require a nurse to push his IV stand and keep an eye on all the lines, my attention is diverted to the huge “Crusty the Clown” slippers on his feet that make the whole scene evoke laughter more than pain. As much as he might drag his feet on some of the assignments he’s had, he’s excited about getting back to school. I’m not sure he has the green light from his parents, but he speaks of getting a Husky puppy when he’s back home and is threatening to name it after one of the doctors.

Make no bones about it, the ICU is a scary place where kids and parents are faced with circumstances that are the stuff of nightmares. To be here is to take up a battle position and wage war against the opponent. We take on any sort of demeanor in such a showdown; we can get angry, hostile, fearful or overconfident as we fight against that which scares us. But leave it to a teenager like Cesar to be the most rebellious. He demonstrates the greatest defiance in laughing before the foe, fully aware of it’s might but unwilling to let it steal his joy.

All hail, Cesar—our conquering hero!

How come we never see Cesar and Batman at the same time?

We Will WIN this Waiting Game!

Well, Rolf and I made the switch-a-roo and I’m back with Rudy at UCLA. Rolf didn’t get home until after 11pm last night and then got off to an early start at work this morning; I left for LA as soon as the kids went off to school so we were kind of like two ships passing in the night but, hopefully, future exchanges won’t be so quick in nature. It will take some time to adjust to this new “commuting” routine as Rolf and I take shifts between Rudy and home but, it seems, time is the one definitive factor in this scenerio of which we have an abundance!

Rudy spent today sleeping and recovering from yesterday’s surgery. He is pretty wiped out…opening his heavy eyes periodically only to close them seconds later. That’s okay, though! As much as I’d love to be reassured by his big, bright, lively eyes, I’m grateful he is able to rest comfortably. Everyone I’ve talked to today has said the same thing…what Rudy needs now is TIME. He needs a couple of days to see a reduction in and eventually elimination of the fluid draining from his chest, he needs big doses of nutrition into his gut and then time for his muscles and body in general to strengthen, he needs a week to 10 days to see possible extubation from the ventilator and then, ultimately, he needs alot of time to learn to feed without a feeding tube! Of course, the big risk for Rudy right now is infection and the longer it takes him to reach all these milestones, the greater the risk of infection and setbacks. A tricky balance continues but I’m confident that no matter how weary we may get as we wait, we will win this one!!!! A few weeks ago I prayed we’d be home by Thanksgiving, now I’m wondering if bringing Rudy home by Christmas is even realistic! It’s so hard to know so we step back, regroup, readjust expectations and continue to take it ONE DAY AT A TIME! Thank you for waiting along with us diligently praying!!!! We can’t thank you enough…

Daddy’s turn to hold Rudy!!