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.

Happy Thanksgiving!

happy thanksgiving
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!

Fun with Max and Olivia
Fun with Max and Olivia

 

 

Max kiss

 

 

 

 

 

 

Rudy's tree
Rudy

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

chipmunk cheeks 2chipmunk cheeksI’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.