We’re Back in the Saddle Again…

Our little leprechaun is holding steady on his feeds!!! It’s 10:30pm here in California and Rudy is tolerating his 5 ccs an hour quite well…his belly isn’t any bigger, he had a stool this afternoon and Nurse Lindsay assures me she hears good bowel sounds with her stethoscope so it appears we may be back on the road to recovery! Yippy I arrived in L.A. around 12:30pm and found Rudy awake and alert when I got to his room…he drifted off to sleep shortly after I arrived and had a nice nap. I had business to take care of around the hospital and did so while Rudy slept and then came back to an awake, alert little boy again! It is soooo nice to see Rudy awake and not distressed. He hasn’t needed any rescue doses of meds today and has been sailing through his 2-hour sprints on the trach collar! It is a very different story around here compared to 2 weeks ago…we are grateful for the shift. The cardiology team rounded this afternoon and Dr. Brian et al seemed pleased with Rudy’s condition – it’s always reassuring to see big smiles on the docs faces. So, we will continue with the feeds tonight, Rudy will get a break from the sprints until morning and hopefully rest quietly through the night…although 4am does seem to be a bewitching hour for him.

Thanks to Nurse Kelly Rudy is all ready for St. Patrick’s Day…when I arrived this afternoon, Kelly was visiting from the adult CTICU upstairs with festive buttons in hand to adorn Rudy’s blanket. His little shamrock says “Kiss me I’m Irish”…well, after meeting Katie Manning’s Daddy, it would be more accurate to say “Kiss me I know someone who’s Irish” but, hey, Rudy won’t pass up an opportunity to get a kiss or two!

Things got so busy over the weekend I didn’t have a chance to report that we had a little bit of drama on Friday morning…Rudy’s trach worked it’s way out and, for some reason, the RT and team of nurses that came to our aid couldn’t get it back in. Rudy ended up with a trach a whole size smaller than what he had originally. After giving him a couple of hours to regroup, RT Lyle came in and attempted to put the 4.0 back in…it still wouldn’t fit but he ultimately got a 3.5 safely secured. Dr. Andy decided it best to leave it and if the smaller trach becomes problematic in the future, they can always dilate the trach hole and eventually get the 4.0 in again. He has been breathing with the smaller trach all weekend and is doing fine with it…the only problem is that the air leak around the trach that was setting off the mind-numbing vent alarm is even more pronounced now that the trach is smaller and, therefore, setting off the alarm even more! Ha Ha Thankfully tonight Rudy is positioned in such a way that the alarm is resting quietly as well…aaahhhhh, so peaceful!

Friday was also a big day because Rudy got to meet his Aunt Cora who flew in from Alabama to spend the week in Santa Barbara…unfortunately, Rudy slept through her visit here at the hospital but his older sibs sure are enjoying the creative fun and loving attention Aunt Cora brings with her wherever she goes…a big thanks to Uncle Brian and cousins Joshua, Heather, Kaitlin and Jessie for sharing her with us!!

: Meeting Aunt Cora

Well, I’ve rambled on way too long because here it is almost midnight!!! I guess it’s time for bed…after Rolf’s post about hope, my favorite verse has been swirling around in my head so I’ll share it with you as I say “goodnight”…”May the God of Hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

Chow Time! (again)

It’s Monday morning here in Santa Barbara and Trish and I just had a quick breakfast out by the harbor before she hit the freeway to LA. I just checked in with Nurse Veronica and she told me that she was doing some cooking! During rounds this morning, there was consensus that we should try feeding Rudy again. The drainage out of his abdomen has been consistently down (40cc over the last 24 hrs) and, more importantly, yesterday’s labs indicated that the percentage of chyle is very low. I don’t recall the exact unit ratio, but yesterday’s count of triglycerides (which would indicate chyle) was 78. At the initial trauma two weeks ago it was up over 1000, so we’re hoping that indicates that the lymphatics have healed.

They’re starting out with a mix of special formula with no long-chain triglycerides or fats (as these go right into the lymph system). 5ccs per hour at a somewhat diluted setting and we’ll see how it goes. Let me spare articulate formulations and simply say: “PLEASE PRAY! PLEASE PRAY! PLEASE PRAY!” We want to get past this hurdle in the worst way. Rudy looks really good–the team upped his sprints to 2hrs today as he wasn’t bugged in the least by 90 min stints over the weekend, so we’re hoping to have more positive progress today.

Perhaps a mundane detail, but in the evening Trish and I had together yesterday we put together a new crib for Rudy–at home. As all of Rudy’s life has been lived out in the hospital thusfar, it struck me as an act of prophetic hope (like Jeremiah buying a field in a land about to be overrun in wartime, declaring that one day it would be habitable again [Jer 32]). From the time we learned of Rudy’s diagnosis, we put most of the typical baby setup stuff on hold and as you’ve seen by our posts, we are challenged to walk a line between brutal realism and hopeful faith. This action falls in the latter category. Rudy’s home is not in the hospital. The bed he sleeps in is much cooler than the one at home, but it isn’t his bed. I haven’t forgotten about the elevator ride they owe us. We’ll take it someday. We’ll get to make that beautiful drive along the coast WITH Rudy and then he’ll get to sleep in HIS bed. Not sure how that’s going to happen and what further obstacles lie in our way, but this morning I feel the need to express hopeful faith.

Stay tuned for feeding updates!

Patience: Watching, Waiting & Holding Ground

It’s been a relatively quiet weekend here in the ICU. I’ve come to take comfort in seeing empty rooms–it usually means less intensity and it also means fewer kids and families in distress. Speaking more out of my own self-interest, things have been calm in 5453. The order for the weekend is continued patience as we hope for the fluid in Rudy’s abdomen to subside. I wish things would move faster, but I’ve learned to take calm and boring over action and excitement–the latter coupling usually isn’t comforting in these parts.

Nurse Nicole might take issue with my assessment of things being calm as our theory of Rudy being part werewolf is gaining some credibility. Along with fingernails that resemble talons, he tends to be very calm and peaceful during the day, but then fusses up a storm during the night. There weren’t any distressing numbers, but he managed to set the vent chime off about every 3 minutes, which had her on her feet for about 4 hours. She came on calling him “Rudy the cutie”, but fortunately I was asleep when she left so I didn’t hear if her nickname had changed.

Watching the chyle drainage from the stomach cavity is probably something I shouldn’t do to closely. It was down to 30cc on Friday and up to 60cc on Saturday. More, yes, but we’re still dealing with little quantities. The trend is down and that’s good. It’s still being determined whether they’ll try feeding on Monday or Wednesday, but we’ll let the doctors work that out. Rudy’s situation is all about judgment calls and it’s good to have different opinions playing off each other. Dr. Andy has kept him on three 90 minute sprints daily and he cruises through them. He could easily go longer, but the objective is to keep him exercised but not push him until he’s able to take on enough calories to have the energy to breathe well.

Rudy had a chest Xray this morning and his lungs look clear, but there was some concern about whether his heart was enlarged (gulp). Dr. Maggie came in just now to do an echo as it’s been about a month since they checked and saw that everything was in order–sometimes the imagery on the Xray can be unclear. It was great to have Maggie check as she felt that, not only was the size fine and the heart clear of fluid, but the function looks better than ever. So, the ironic pattern is holding–we came for a heart operation, but it’s not the heart that’s keeping us here.

Please pray for this week. When they start to feed isn’t such a concern as at this point a couple of days here or there don’t matter. We just really want the fluid issue to be resolved.

Honorary Member of Brownie Troop #50649?

I know Rudy is the wrong gender but he should be recognized as a honorary member of his big sister’s Girl Scout Brownie Troop because he has sold more cookies than the average girl scout! Ha Most of the activity in Rudy’s room today was various hospital staff in search of a yummy afternoon snack…and Rudy & I were more than happy to help meet that need with the stash of classic girl scout cookie favorites we have piled up in our room. We’re probably violating some PICU policy but it has been a productive day of sales! Ha Ha A big thank you to all our friends and family both near and far who helped to make this year’s cookie campaign a smashing success…

It’s hard to believe it’s Thursday already…this week has flown by. Rudy had another calm day for the most part. He did have several episodes this afternoon when his heart rate dropped significantly, popped back up and then dropped again. His issue is usually a high heart rate so this was a little concerning at first. They ran a blood test and determined his electrolytes were low so he’s being treated with potassium and magnesium. Rudy was doing really well with his 2-hour trach collar sprints earlier today but because of his low heart rate, his last sprint was cut short so he’ll start back up again in the morning. His heart rate is still a little low but he looks comfortable and his color is good. For now, Rudy is comfortably sitting in his vibrating, bouncey chair looking forward to a visit from aunt Cora (flying in from Alabama) tomorrow. Fun…Fun!

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Happy 23-week Birthday!

The little man is 23 weeks old today. The day came and went with little drama which is always nice. To celebrate I was successful at fixing Rudy’s fishy mobile which has been sluggish for a couple of weeks. I don’t know how much longer it will last but for today he was able to enjoy the familiar sounds of a much loved crib companion…he isn’t reaching for the flying fish yet but he sure does like to stare at his little friends as they go round and round. As with his breathing and feeding, Rudy has alot of ground to make up with his OT and PT. He hasn’t had many treatments at all since his first stomach surgery 2 weeks ago and I’ve noticed he resists any movement of his arms and legs. Prior to the hiccups of last week, the range-of-motion exercises we were doing seemed to be loosening things up so it’ll be back to square one again when OT and PT start back up again. He did gain some ground off the vent today, though. Dr. Andy ordered his sprints on the trach collar to be bumped up to 90 minutes which he did 3 times today with great ease! There is still fluid draining from his stomach cavity but it continues to decrease slowly. The surgical team came in this morning during early morning rounds and estimated we might be able to start feeds again early next week. We’ll see…

All in all, we are moving forward and in a more encouraging place than last week, however, I did have a hard time believing today that we’ll ever leave this place. Even if Rudy does get to come home in a few weeks, it won’t be long until we’ll have to come back and do it all again. My prayers are starting to shift a bit…I’m focusing more and more on quality of life prayers for Rudy. It is taking him such a long time to get to a stable place and even though I know the odds of him leading a “normal” life are slim, I do pray for a life that is lived more outside of hospitals than in. I pray that the non-heart issues he is facing will ultimately resolve themselves and he will not develop chronic struggles with his digestive system, respiratory system and the failure of other organs. This has certainly been my hope (and, quite frankly, a naive expectation) from day one but I have also learned in the almost 6 months since then that there are NEVER any guarantees no matter how aggressive the treatment may be and the statistics for babies like Rudy can leave you feeling pretty grim. I’ve found that the non-crisis days, like today, leave me with too much time to think…and that’s when fear sets in. I’m so glad I can bring those fears before God – I just wish I was better at letting them go before they get the best of me. So, tonight I end the day thankful for the calm day Rudy had but also challenged in truly giving my fears over to God. ‘Praying the next couple of days for Rudy are days of great gain…on all fronts. Thank you for carrying us all through your prayers…

My Garden Gnome is Better Than Your Garden Gnome!!!

It comes with the territory these days that we have home projects stacking up with little hope of getting them done unless it’s on the fly. As I pulled into the driveway this weekend, the untended lawn was too much to ignore and I tried to flip through my mental calendar for an evening to get to it after work. Not sure when it happened, but as I pulled out this morning I noticed that it had been mowed. Come to think of it, as I haven’t mowed the lawn since September, I’m thinking this wasn’t the first time the magical garden gnome has visited. I have some guesses as to the identity, but I already know he/she is better than yours. Your garden gnome just stands there looking cute, but doing nothing. Mine does actual work.

Thank you, mysterious Garden Gnome! The little encouragements go a long way.

DejaVu

Rudy’s big brother turned 10 years old just a few minutes ago…when I merged onto the 405 as I headed back to UCLA this evening, I couldn’t help but think about our rather tense ride on the 405 ten years ago when I was in labor on our way to the old UCLA Medical Center. I remember so vividly being stuck in rush hour traffic and nervously reassuring Wilson that Mommy was okay in between contractions, Rolf calmly checking his watch but secretly fearing we’d have to nickname our baby “405”, the precious elderly man in the ER who, after watching me white-knuckle it in the chair next to him, graciously let me “check-in” before his wife who was having chest pains (!), and the well-intentioned nurse who didn’t believe me when I told her the baby was on it’s way… boy, was she surprised to see Max’s head when she lifted up the sheet! What a crazy, fun night that was! It’s all still so fresh in my mind it’s hard to believe it was 10 years ago. Max has eagerly awaited life in the double-digits…10 years down and, if he follows in the footsteps of the man after whom he is named, he’ll have 90 more. May it be so!!! Happy Birthday Max…I’m so thankful for you. You’ve brought a passion for all things active and an infectious joy into the life of our family and I love you!

Things are calm in Rudy’s room tonight…he was fast asleep and in the middle of a sprint off the vent when I arrived. He’s on the vent for the night now and will start back up with one-hour sprint exercises in the morning. I’m anxious to touch base with the doctors in the morning. Hopefully, I’ll have more information tomorrow regarding a game plan for this week. For now, though, I’m hoping all our little monkeys get a restful night’s sleep…both here and in Santa Barbara 🙂

Blessings to you and yours as well!

Maybe Rudy isn’t a morning person…

Nurse Amy and I are postulating a theory that Rudy doesn’t like mornings. Today, he started fussing at about 5am and was somewhat agitated right through noon. He wasn’t throwing major tantrums and his heart rate wasn’t extremely elevated, but his breathing was rapid enough that we ended his first sprint at about an hour. Perhaps the extended time off the vent over the weekend tuckered him out a bit and there’s no need to rush as we’re waiting on stomach output to resolve itself. He settled down nicely this afternoon and is just finishing up his second one hour sprint with a bit more comfort.

Not much else to report around here. Several rounds of doctors have swung through today (ICU team, Surgery, GI, Cardio) and they’re all keeping tabs on Rudy, but as the plan for the week is to wait out the chylous acides there’s not much in the way of orders. He had an Xray of his lungs today which satisfied everyone and the cardiology team may do some imagery of his heart, arteries and veins just to make sure there are no blockages or anamolies that would be affecting pressures in his lymphatics. There’s not much expectation that they’ll find anything, but anything’s worth ruling out.

Rudy is bright-eyed and awake right now so I’ll sign off and play with him for a bit. This afternoon I’ve introduced him to peek-a-boo by covering his face with a blanket and then pulling it off. To say he enjoys it might be an overstatement, but it sure has him interested. We’ll see how it takes.

A peaceful end to a full weekend

Dude! Dude! Today we had Max’s party! Dude, we went to Golf n Stuff, dude! It was so fun, dude! Dude, we played video games, mini golf, dude-dude, awesome go carts and bumper boats-dude! It was so awesome, dude!

What a great day for our (almost) 10 year old, who’s excitement can be measured by the frequency with which “dude” is interjected in his speech! Today was a great celebration with maxs-party-013 our family and Max’s friends. Perhaps like never before, I have such an appreciation for opportunities to watch my kids laugh and have fun. On top of that, it turns out our experience with all of the alarms going off in Rudy’s room makes surviving the sensory overload of a video arcade much easier. On the other hand, I don’t think I’ve ever been more aware of how many places there might be to pick up bacteria–tables, chairs, golf clubs, steering wheels, game controls… I think I’m on my way to developing into one of those OCD people who wash their hands every 5 minutes. I found myself longing for a dispenser of hand sanitizer.

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We were able to enjoy Max’s celebration so fully because the reports from UCLA the last two days have been reassuring. We’ve come to see that it usually takes 2-3 days for Rudy to stabilize after a traumatic episode and this time the team seemed to arrive at equilibrium late on Friday. As Trish posted, the trach collar sprints went very well and this afternoon the team returned him to the vent after 25 hours off. He wasn’t really under any stress, but they just decided to not push him too hard. We’re happy with that–you’ll recall the last time we let him go off and running he crashed after about four days. As it will take a couple weeks for the stomach issues to get worked through, there’s no need to rush the breathing. We’re just so glad he can do what he’s doing. Tomorrow AM he’ll get a lung Xray and we’ll be very interested to see how his lungs look. The nurses and I are laughing because for the last 30 minutes he’s actually been setting off an alarm because his O2 sats are too HIGH (over 95%). I’m not sure if we’ve ever heard one of those before. He keeps setting it off and each time a nurse needs to come in and push the button. I think he’s very proud of this new trick and the fact that it gets him attention (even if he’s asleep). GO, RUDY!

Being able to sit here with Rudy at 10pm on Sunday night is also giving me a chance to sit and think back over our full weekend. As I wrote about a “new kind of normal” earlier in the week, it really feels like we were able to taste some of that this weekend–a richness in our family amidst the unknown and the challenges. I would also be leaving something out to not talk about the Rescue Mission Graduation Ceremony we had last night. I am so proud of the team I get to be a part of and the way it’s used by God to change lives. We celebrated 13 heroes last night who came into recovery a year ago–from the streets, prison and who knows where else–and were now sitting before us radically transformed. Clean, sober, surrounded by friends, reconciled with family and looking toward the future. I don’t think any of them could have had hope enough to picture themselves sitting there last night a year ago, but every day they summoned enough strength and trust to get up and continue on–or at least just stand. They leaned on God and the people around them and that brought them through. Their courage inspires me and is something I’ve thought of often as we’ve navigated this journey with Rudy, where the daunting fight can only be met by faithfully taking the next step we see before us. The same God that worked such miracle for Leslie, Lacey, Sherry, Sharon, Marie, Cindy, Jennifer, Marlin, Andrew, Anthony, Donnie, Jake and Kevin is with Rudy. Being reminded of his love and power was so helpful. Thanks friends, for what you’ve taught us!

Breathing Easier

Wow, today was one of those rare days when the bulk of our family was together in Santa Barbara doing those normal “pre-Rudy” activities. Rolf took advantage of being home on a Saturday morning and took his kayak out for a little ocean excursion; the kids played nicely together as they experimented with mentos mints and Coca-Cola over at Lake Los Carneros and then headed home to jump on the trampoline; I caught up on some “house business” and began preparing for Max’s big birthday bash tomorrow (he turns 10 on March 10th!); Rolf took the kids to “Lizard’s Mouth” – a nearby hiking area with fun boulders to scramble up and caves to climb in AND Max had a basketball game which our dear friend, Lisa, took him to while the rest of us attended the Santa Barbara Rescue Mission Recovery Program Graduation…always an amazing event that touches us deeply. Phew, it was a very full day and while we scurried around to all the various activities, little Rudy worked hard on his breathing. He sprinted with the trach collar for a couple of hours this morning, took a 2 hour rest back on the vent and has been back on the trach collar since 2pm this afternoon. We’re keeping close tabs on him because this has happened before when he did great out of the gate but tired after a couple of days. At this point, since we’re stuck waiting for the fluid to stop anyway, we’d be in favor of starting him slow on the ventilator wean. Speaking of lymphatic fluid, his output is less today so we hope this means the it will stop completely very soon. We look forward to celebrating Maxi tomorrow afternoon at “Golf ‘n Stuff” and Rolf will head down to be with Rudy after the party. We’ll be able to give you a more detailed update on Rudy’s condition then. It sure was hard to leave Rudy yesterday knowing he’d be “alone” for a couple of days, but we are so grateful for the PICU team taking such great care of him and the CTICU team of friends who drop in on Rudy often to let him know he’s not alone! Bless them all…and you for your continued support from all corners of the world!