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!

 

Cesar and Enrique visiting Rudy
Cesar and Enrique visiting Rudy
How come we never see Cesar and Batman at the same time?
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 holds RudyDaddy’s turn to hold Rudy!!

Get some rest, Rudy!

I just got back to Rudy’s room this evening and he’s resting comfortably.  Even with the upheaval of surgery, he looks loads better than he did on the walk down to the OR.  I’ll spare you the geeky details, but they ran post-op labs and all of the numbers are right back in the range where they should be.  They were able to back the ventilator down from where it was this afternoon because he doesn’t need that much help breathing.  Getting that fluid off gave him some immediate relief, so now we’ll pray that the fix works.  The doctors expect to know in the next two days.  Assuming all goes well, we’ll be able to start loading protein as his malnutrition is just making it tough for his body’s systems to work like they should.

We’re glad today went well, but even a “minor” surgery makes for a day of anxiety.  I’m going to spend a few more minutes with Rudy in the quiet of his room and then make the drive home.  As I’ve been writing this, he’s actually gotten really alert so it’s cool to spend the last moments together looking into those big eyes.  I’m glad Trish had some good days at home with the kids, but we’re all disappointed that I wasn’t able to make it home for dinner.  It would have been our first one together at home in a long while. 

I’m ending another day so grateful for the dedicated hands that are taking care of Rudy.  Early this morning, Nurse Mary was indignant that I hadn’t yet held Rudy so she let me help with his bath and lift him up while she changed the sheets.  During the day, Nurse Rosella brought her personable blend of comfort and competence.  There was solid consensus among the doctors (Fellows Andy and Julianne, Drs. Brill, Reemtsen and the ubiquitous Dan Levi) and they were all very attentive throughout the day.  There’s no way to make a day like today anxiety free, but there is such comfort in being the center of so many experts’ attention.

Thanks for walking through it with us.  Rest well, Rudy–Nurse Mary and Dr. Andy won’t miss a thing.  Mommy will be here tomorrow before you know it.

6pm…He’s Out

Rolf just talked with the surgeon and Rudy will be back in his room in about 30 minutes.  He was able to “tie off” the duct and did some other things while he was in there…more detail on that later I’m sure.  Dr. Reemtsen said there is an 85% chance this will address the problem so our prayers continue that Rudy’s body will respond as it should!!!  Please pray for a quiet and comfortable night for Rudy and a safe trip home for Rolf later tonight.  Okay, (BIG sigh) the end of another day…I’m so grateful God’s mercies are new every morning!

5pm…He’s In.

I just got the call here at home from Rolf in the surgery waiting room that Rudy went into the OR at 5pm.  There was some delay in getting him to the OR as the attending CTICU doctor couldn’t release Rudy until they got some numbers back from the lab but he’s there now…Dr Reemtsen’s part will be done in 30 minutes, Rolf will probably see him in about 90 minutes and I’m pacing the kitchen floor at home in Santa Barbara.  It has been good for me to be home with the kids today doing school drop offs/pick ups, football practice transport and going on the Girl Scout Brownie field trip (taking cookies to the fire fighters!) but I must say it is agony not being with Rudy too.  I’ll head back to take my shift with Rudy tomorrow morning and stay until Friday most likely.  Please pray that this procedure will do what it is supposed to and that this will be the push Rudy needs to get past this “fluid” hurdle and positioned for some progress once he recovers from surgery.  Thank you…thank you!