No Change

Rudy spent Veteran’s Day much like he spent Election Day one week ago…sleeping.  He did complete three 2-hour sprints successfully which nurse Katrine and I celebrated this evening.  It seems like we’re making progress with the sprints but he does seem to do better with them when he is sleeping.  When he is awake, he struggles more for his breaths so I’m praying he will learn how to calm himself down while awake and settle into a relaxed breathing pattern.  On the list for tomorrow?…More sprinting and sleeping. 

The fluid from his chest tube on his right side is still draining – fluctuating a bit in the amount so they are “keeping an eye on it”.  I think everyone would be relieved if it just stopped completely.  It remains an issue until it does.

It’s quite late and Rudy is sleeping so I think I’ll hit the hay as well…Sleep tight!

A Mother’s Love

The picture of “a mother’s love” was painted for me many times over this weekend…as I reflected on my monther-in-law’s willingness to take care of my home and children for 6+ weeks, in my mother’s efforts to fly all the way out from Kansas for a mere 48 hours in order to get back before my dad begins his radiation treatments this week, and in the grace with which the Mannings let their little Katie go – peacefully in Vickie’s arms.  All emotionally moving in their own way and all very vivid reminders that what Rudy is embroiled in is serious requiring great sacrifice and vulnerability.  Even now as I sit and watch him labor through an attempt at a 3 hour sprint off the ventilator, I’m struck by the obvious – he is in a fight for his life.  Not to minimize the progress he has made so far, but because my son can’t breathe on his own beyond a 3 hour exercise, it is hard, sometimes, to imagine an existence for Rudy beyond what he has known so far. 

I’ve come to realize that one of my greatest desires, as a mother, is for my kids to be known…to be understood and appreciated for their unique gifts and talents…nothing blesses me more than when others take the time to invest in my kids whether it is their teachers, church leaders, close friends or family…it means so much to me.  The desire for Rudy to be known (even in the isolation of an ICU) is just as strong as with my other kids which is why I’m so grateful for the medical team that genuinely cares for him in so many ways I never could, for the visitors who have witnessed in person how truly soulful the look in his eyes is and for the blog that has allowed us to share Rudy with so many in far away places! 

Thank you for your faithful investment in our family through your constant love, prayers and support during this time.  Sacrifices that are not lost on us!

Oma and Grandma Jo
Oma and Grandma Jo
Trio of Moms
Trio of Moms
Oma-love
Oma-love
"Guess what!  Gma loves you"

No Surgery!

In the wake of Katie’s passing with grief and much concern for Alan, Vickie and their families, it is hard to know where to go with our own updates about Rudy…so many thoughts and feelings to process and yet, many of you are eager to know what’s going on today…I feel the need to post a more “thoughtful” update but for now let me just say that Rudy’s surgerical procedure has been cancelled.  The doctors had me sign a consent form last night “just in case” but the xrays came back looking good and after the rounds this morning, they decided the procedure wasn’t necessary.  I will share more later and, as always, thank you for your prayers!

Cuddle-bug

So cozy...
So cozy...

 

Okay, these pictures really don’t do him justice but I walked into Rudy’s room last night after the evening shift change to find the little guy snuggled so sweetly…Nurse Pam had run her tests, cleaned him all up and got him all settled on his side.  He looked like such a big boy cuddled up to Pooh!  Around 10pm he got turned to the other side and slept very comfortably and soundly all night long!  So sweet!

 

 

Sleep tight...
Sleep tight...

 

Yesterday was uneventful…It was fun to see Dr. Robert back on the floor after a couple of weeks.  Because Rudy’s surgical procedure was postponed, he spent the day just hanging out.  He battled high blood pressure but didn’t seem too bugged by it.  Yesterday was one of those fun days with Nurse Denise where he was awake and alert a good bit of the day but comfortable and not anguished.  The fluid draining from Rudy’s lungs has remained the same…they will continue to monitor this the next couple of days and then decide whether or not to do the surgery on Monday.  The big news of the day came when we got the test results back from the Infectious Diseases people confirming that Rudy is infection-free so the order came to take him off of three antibiotics!  Yippy!  He also had a couple of successful hour-long ventilator sprints again which is always encouraging so I believe the plan for today will be to continue exercising his lungs.

Rolf came back to UCLA early this morning and we will both head home to Santa Barbara late tonight for some time with the kids and the, always special, Rescue Mission Recovery Program Graduation tomorrow night.

Nov. 5: 5 weeks old today

Five weeks ago today our little Rudy was born.  That means we’ve had five weeks of foot holding, hand grabbing and head rubbing on Rudy, five weeks of the yummy soup down in the cafeteria, five weeks of walking to and from the hotel every morning and late night, five weeks of listening to the beeps and alarms of monitors and medication dispensers hooked up to our son, five weeks of hearing a recap of the kids’ day by phone right before bed every night, five weeks of searching Rudy’s big blue eyes, five weeks of (almost) daily blog posts,etc, etc, the list goes on.  Not knowing, really, what to expect when we started this journey, a five week timeline is about what we originally planned around.  Well, five weeks have come and gone and now it’s time to regroup, adjust expectations, and focus on a “plan B” for the next unknown block of time. 

I am where I was 5 weeks ago…unsure of what the next several weeks will bring and VERY unsure of how to plan for the unknown.  In Rudy’s world, you take life one hour at a time and yet I have a family at home that has needs that go beyond the next hour and I’m finding it hard to function in both worlds.  All this to say, it’s time to look ahead to some degree and it’s a little overwhelming.

Rudy had an uneventful 5-week birthday.  Today’s focus, once again, was fluid output AND it has remained about the same-no change on average since yesterday.   In regards to the procedure scheduled for tomorrow, there were no clear indicators whether or not to do it which led Brian (Dr. Reemtsen) to hold off and postpone until Monday giving Rudy a few more days to prove himself unworthy of another trip to the OR!!!  Because we would prefer Rudy not undergo another surgical procedure if at all possible, we’re at peace waiting a few more days.  Please continue to pray that the fluid draining from around his lungs WILL stop (making the surgery CLEARLY unnecessary).  Thank you, thank you!

“Watching the President Show”

When Olivia called me this evening, I asked her what she was doing and she said, “Watching the President Show”.  Yep, that’s what Rudy and I are doing as well.  It’s Rudy’s first presidential election and he has been fast asleep most of the day.  President-elect Obama is about to give his victory speech but, with all due respect, I don’t think Rudy cares much about such affairs…when he is awake, he looks as if all he cares about is to be tube and line free.  Well, if the fluid around his lungs ceases to drain, he could get his wish to be free of at least 2 tubes…okay, I won’t go there yet but I can’t help but be encouraged.  There hasn’t been much change since my post this morning…the fluid output has remained the same.  No less but no more either.  I’m praying that, come morning, there will be no output at all! 

Rudy IS minus one of his arterial lines.  The a-line that was in his left hand has been bleeding pretty consistently the past couple of days.  This particular a-line was monitoring his blood pressure but has been in so long that it just started to wear out.  For now, they have not replaced it and are relying on a little blood pressure cuff wrapped around his ankle.  So, for tonight, his little hands are free.  We’ll claim any progress we can!  Thank you for your continued prayers!!!!!  Love to all from Rudy’s room…

Steroid-cheeks
Steroid-cheeks

Brotherly (and Sisterly) Love

The Bruin Bear
The Bruin Bear
We started November off right with some family time together on the UCLA campus on, believe it or not, a rainy day!
Some quiet time with Rudy…Sunday Nov. 2nd…
Some Maxi-love
Some Maxi-love
A big smile from big brother...
A big smile from big brother...
Rudy has alot of angels by his bedside...including this one in the flesh.
Rudy has alot of angels by his bedside...including this one in the flesh.
How grateful we are for Oma and Opa and the many friends who have transported the kids back and forth on the weekends to see Rudy.  It’s not an easy way to get to know your new baby brother but how very proud we are of the kids and their efforts to engage in this journey as much as they are able to.  Rudy knows how much he is loved by his big brothers and sister!
There is some good news on the “Rudy Front”…Dr. Brian just came in and said he’s encouraged by the decreased fluid output from the chest tubes!!!!!!  There is little fluid coming out of the left chest tube and although there is still fluid draining from the right side, it IS less!  If the output continues at this rate or decreases even more, he will cancel the surgical procedure on Thursday.  This is great news.  (Thank you, Jesus, for such a tangible answer to prayer!!)  So, we ask that you continue to pray for this fluid to stop draining completely!  Rudy looks a little pale to me today and when he is awake, he’s fussy but his numbers are stable so it has been a quiet morning.  Well, it’s time for my daily cup of soup downstairs…more later!

Due Date – November 2, 2008

11-2-08
Rudy

It’s hard to believe today was Rudy’s original due date…my oh my, his birthday seems a lifetime ago. 

We spent the day at his side watching numbers carefully and quietly with the children in tow in the morning and then with a string of longtime friends in the afternoon.  Rudy’s status is stable this evening.  His blood pressure fluctuated most of the day and he did battle a low-grade fever but no major dips like yesterday.  The kids got to see him and talk to him while he was awake and alert which was fun for them.  I was happy for the little bit of time they had with him. 
So, here we are at the start of another week…I’m not sure I have the energy to relay details tonight about Rudy’s condition…in general, it remains the same and although the long wait for “real” progress is wearisome, we remain hopeful…hopeful that this week will hold more milestones for Rudy.  Speaking of milestones, this coming week holds two special celebrations in the life of our family…our 16th wedding anniversary on the 7th and the Rescue Mission’s Drug and Alcohol Recovery Program Graduation on the 8th!  Wouldn’t it be cool to add “Rudy breathing on his own” to the list?!!!! 
P.S.  I’m happy to report that the older kids had a fun Halloween…The boys enjoyed trick-or-treating with special neighbors and Olivia went to her first Halloween Party!  Thanks Katie, Nancy, Jacob, Mason, Brandon and Jannele!

October 29, 2008 – Happy 4 week Birthday Rudy!

Today is Wednesday October 29th and Rudy was born 4 weeks ago.  Quite a milestone in our little world that is so centrally focused and limited by the boundaries of the 4 walls around us.  Rudy’s condition hasn’t changed much today which is a good thing.  When Rolf and I arrived this morning, he was awake and annoyed!  It was clear he wasn’t happy but it wasn’t distressing for us because it was also clear that he was alert and aware and had alot of fight in him.  His blood pressure was high but all his other numbers were good and by mid-day he had settled down and seemed much more comfortable.  The team allowed him continued rest today and didn’t schedule any sprints off the ventilator but they have gradually slowed down the ventilator rate and he is currently getting 12 bpm which is much lower than the 30 bpm he was getting earlier yesterday.  At this point, everyone on the medical team is iching to get Rudy off the ventilator and there is risk no matter what course of action is taken…so we are praying for wisdom in that decision and God’s life-sustaining support when the tube is finally removed so the little guy doesn’t have to be re-intubated.

It seems I’m the one who got a gift on Rudy’s one month birthday.  This afternoon Rudy’s nurse asked if I could help her change Rudy’s bed sheets.  I jumped out of my chair so quick realizing that I haven’t been able to do ANY practical chores for Rudy and I was thrilled.  At first the nurse had me scoop him up mattress and all as she replaced a sheet that was positioned underneath his little mattress.  But then she very carefully lifted up his body making sure none of his lines were pulled too tight and said “okay, if you could just hold him like this while I pull his mattress out…”!  I was taken aback because I didn’t expect I’d get to actually hold him!  For the first time, I was able to hold him skin to skin during the time it took the nurse to pull his mattress pad out, replace the soiled sheet with a fresh one and slide it back underneath.  Granted, it wasn’t a “hold to your chest and cuddle” kind of moment, but it was exciting just the same! 

After the bedding change, the nurse worked hard to reposition Rudy comfortably and ended up propping his leg up on one of his stuffed animals and I laughed because he looked just like Rolf in one of his favorite lounging positions!!!  (see picture below)

 

 

So, all in all, today was a good day.  After sleeping a good bit of the day today, we wish Rudy continued deep sleep and a peaceful night tonight.  We wish you a good night’s sleep too!  🙂