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!!!

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!!!

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.

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.

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!!