Rudy Is The Wun I Love

It’s Tuesday at noon and we’re sitting with Rudy waiting for various test results to come back.  The blood cultures take a bit of time so we don’t quite know what we’re dealing with yet in regards to infection, etc. but Rudy does seem to be more comfortable today which is always a relief.  Last night was troubling for me on many levels but I was fixated on the fact that his eyes were open but they were unable to focus on or track any movement…they just slowly swirled around “looking for something” as he struggled with his breathing- probably due to various medications but it was hard to watch nonetheless.   It was clear he was tired but he just couldn’t go to sleep.  Funny, Mommy and Daddy had the same problem!

Bright-eyed monday morning
Bright-eyed monday morning

 

What’s amazing AND maddening is how quickly his condition can change.  Earlier in the day yesterday, he was alert, bright-eyed and seemingly close to getting extubated.

 

 

 

Struggling by the evening
Struggling by the evening

 

By the evening, he was battling a fever, struggling for a breath and just not “with us”.  I tossed and turned throughout the night wondering if we’re still within the expected range of “ups and downs” the doctors warned us about.  After a talk with the doctor this morning, I think the answer is yes.  Rudy tried a sprint this morning and lasted 30 minutes so they stopped the exercise and have decided to let him rest – no more sprints for today.  But they have made some adjustments on his medications as this may have contributed to yesterday’s challenges.

 

My prayer this morning was that we’d have a day to simply love on Rudy with our presence and our kisses without the constant distraction of monitor alarms going off and procedures for which we need to leave the room and so far that’s the kind of day we’re having. 

 

Olivia's Masterpiece
Olivia

It is so clear that Rudy is well-loved by all the artwork that is lining the walls of his room from cousins, friends and siblings…especially Olivia.  This week’s masterpiece from Livy says it all “Rudy is the wun i love”.  How blessed this little man is!  Rolf and I are doing our best to communicate everyone’s love and best wishes to him as we hover over him, talk, and stroke his head all the while trying not to stimulate him too much.  We continue to walk along with Rudy this very fine balancing act.  Thank you for supporting us in the walk.

 

 

Drain Trio

Well, our fascination with the generic bear chest drain is coming back to haunt us as Rudy now has THREE guarding the foot of his bed!!!  The procedure they did earlier today to drain the fluid around his heart is called Pericardesis.  The procedure was successful and quite a bit of fluid has drained already and his heart rate and blood pressure have stabilized.  Nurse Faye sent the fluid to be tested right away but this particular test could take up to 24 hours so it is unlikely we’ll hear back today on the results.  From what I understand, depending on what kind of fluid is draining from the sack around the heart, Rudy could be treated simply with medication and continued drainage from the generic bears for the next 24 hours or so…OR it could require another surgery (a.k.a. opening him up again) to ligate a duct in the chest where the leak is occurring.  So, we must wait and see.  Obviously, this delays moving forward on getting Rudy off the ventilator.  They tried a sprint early this morning and he was back to tolerating it for only 30 minutes but Dr. Reemtsen wasn’t too concerned feeling like it was most likely because this darn fluid was putting pressure on the heart.  I think he feels Rudy will get back on track once the fluid issue is resolved.  Rudy looks alot stronger going into this weekend than he did when things started to go wacko last Friday so I’m hopeful we won’t have a repeat of last weekend’s episodes!  We sure would appreciate your prayers for such.  I’ll keep you posted…

Exercising the Lungs

Today was another quiet day in the CTICU.  Rudy was alert kicking his legs and moving his arms all around when he was awake and also had some long stretches of comfortable sleep throughout the day.  His numbers remained stable for the most part.  An echo-cardio gram today revealed some fluid around his heart.  At this point, they will do another echo tomorrow to compare with today’s results.  If the amount of fluid doesn’t change, they’ll keep a close watch…if there is more fluid tomorrow, then they will determine a plan of action to deal with it.  I’m not quite sure what that means but I’m definitely praying the fluid will drain without needing an intervention of some kind. 

The big milestone for today was the “sprints” Rudy took almost off the ventilator.  Late yesterday he tolerated a 30 minute sprint where he was doing 80% of the work.  A big jump compared to the 10 minute sprint he tolerated last week before all his episodes over the weekend.  Twice today he made it a whole hour!  It was uncomfortable for him but the nurse said he tolerated it well and the process of exercising his lungs will be uncomfortable for him.  They’ll continue to do these hour-long sprints tomorrow as well as continue to turn down the breaths-per-minute on the ventilator.  Right now the ventilator is set at 18 bpm…their goal is to get it down to 10 bpm in the next couple of days.  It feels like good progress. 

The older kids are enjoying their visit with Daddy (a bit of an understatement) as Rolf will stay in SB through tomorrow.  They are all enjoying Oma’s goulash as I write!  Yum, yum.  I’ll head down to the cafeteria for my daily cup of soup here pretty soon and enjoy a little visit with UCLA nurse and family friend, Lisa, before she heads home after her 12 hour shift.  I can’t believe we’re at the end of another day…and almost to the end of another week!!  Thank you for your continued prayers for Rudy…our little fighter is working hard – sure to make all those cheering him on very proud!

a.k.a. The Milk Maid

 

 

 

 

 

 

 

 

Today is October 21st and it’s hard to believe that today was the date originally slated to induce labor!  My oh my, nothing in this odyssey has gone according to plan but I can say that in this moment of this hour of today I’m thankful…extremely thankful for the quiet morning we’re having after a string of, at times, terrifying moments over the weekend.  The episodes in the past few days have set us back potentially a week which isn’t discouraging to me as long as Rudy remains stable.  The hardest part of this past weekend was watching him struggle.  At one point, Olivia and I were in the room with Rudy when he started having trouble.  The team came in to tend to him and I started to get more and more uncomfortable with Olivia in the room so I decided to leave with her and take her back to the hotel room but I was heartbroken leaving Rudy knowing he was struggling so.  I was torn and didn’t know which was the better choice.  I cried on the walk back to the hotel.  Not really aware that Rudy was distressed, Livy patted my hand as we walked and said “the tears just come and go, don’t they?”. 

(I apologize in advance if this is too much information…)  Another odd dynamic to this whole scenario is that my milk has been in a perpetual state of “letting down” since Friday…a constant (and somewhat exhausting) reminder that things aren’t as they “should” be.  I’m getting quite a reputation in the CTICU for my milk production.  Because I don’t have a place to store my milk, we’ve been storing it at the hospital and the various freezers on the floor are getting full.  The classic quote on this subject came from Olivia when she saw me pump for the first time and ran out of the room to tell her brothers that “Mommy’s making milk like a cow!!”.  So, you can add “milk maid” or “Bessie” to the growing list of new names for me.  It’s all okay with me as long as Rudy will one day need it!  He’s off all breastmilk now and will be for a while so in the meantime I’ll keep dispensing and finding creative places to store it!  I don’t know how good the milk is, though, with all the emotional dips and outbursts of the past few days, I’m surprised the milk isn’t coming out curdled!!

Your amazing persistence in praying for Rudy and our family is GREATLY appreciated.  Thank you!!!

Where’s Rudy?

We thought Rudy’s rig was worth documenting as it is quite impressive…Rolf can fill you in on each and every monitor and drip…all I can seem to focus on is the little monkey in the middle of it all.  No new major developments this morning, but we are a bit weary with the waiting.  The doctors do not see any cause for additional concern, but feel that Rudy needs to get stronger in order to make progress on the ventilator.  It seems they’ve made two attempts at progressively scaling back the ventilator this week, but he’s struggled to keep up.  So now they’re taking things at a much, much slower pace.  He is taking nutrition well, so hopefully this will allow him to get stronger and we would appreciate your prayers to this end.  Please pray that he would continue to make steady progress toward breathing on his own so we can get that tube out of his throat.  Yesterday he did seem to get pretty upset at times and that’s tough to watch–a full-on baby tantrum with red face and flailing arms and legs, but not a sound coming out.  I imagine we won’t be that bothered by the crying noise when it comes.

Mike from Saipan!!!

Look who stopped by to see Rudy today!!!!  Mike from Saipan…see our October 9th post entitled “Another Member of the Brian Reemtsen Fan Club” (link below).  Mike is preparing to return to Saipan soon and made a stop to meet Rudy during one of his last visits to UCLA.  What a treat to meet him…such a nice guy and such a small world. 

https://rudysbeat.wordpress.com/2008/10/09/another-member-of-the-brian-reemtsen-fan-club/

 

Happy 2-week Bday! 10-15-08

Wouldn’t ya know, Rudy spent the entire day yesterday sleeping until 11:30pm!!!  Just as we packed up all our bags and started heading out the door for the night, he opened his eyes and was wide awake ready to play!!!  So, we put our bags down and hung out a while longer not wanting to miss a chance to interact with him…we enjoyed the 30 minutes we had to celebrate with him on his 2 week birthday before WE began to nod off.  Ha Ha  Today he is holding steady with no major improvements or setbacks.  The longer he stays on the ventilator, the longer it will take to get him off but the doctors remain hopeful.  We appreciate your continued prayers for progress in this area…yesterday’s echo-cardiogram confirmed that structurally his insides are sound!  Go, Rudy, Go!!!

Two Weeks and Counting…

It’s so hard to believe that Rudy is two weeks old today!  The days have blurred together since we’ve been here and it’s amazing how fast time passes.  At week two, we find ourselves continuing to wait…to wait for Rudy’s kidneys to kick in, to wait for the ventilator to be taken out, to wait for all the numbers to be where they need to be.  They tried taking Rudy off the ventilator yesterday and he lasted about 10 minutes.  It was concerning to us but the doctors said it is pretty normal to make short attempts like that to exercise the lungs and make gradual steps toward getting him off completely.  It’s getting a little hard for me to watch the patients on either side of us come and go and not get discouraged but we keep reminding ourselves that this isn’t a race and Rudy is doing well for his situation.   

Rudy received his first toy this week…a gift from the Child Life Office here at the hospital.  He’s now the proud owner of a musical aquarium that we fastened to his monitor rig.  It bubbles as the little fish sway back and forth to classical tunes.  It’s actually quite soothing and I find myself getting lulled to sleep in the late afternoon right along with Rudy!  Ha Ha  He likes it alot…he was quite alert the day he got it and when we turned it on for the first time he began to kick and move his hands around and his eyes were fixated on it!  It was so fun to see him react to it!!!  So now his view is a little less sterile and a bit more fun. 

Rolf and I are doing well although I’m a bit steamed because he got mistaken for a UCLA student yesterday when we walked down to the Student Union to run a couple of errands and on Sunday I got mistaken for Max’s grandmother!!!!!!  NO FAIR!!!  I know I’m looking a bit haggered these days but come on…not to mention Rolf has alot more gray hair than me!!!!  Anyway, my ego has taken a hit but my postpartum body is bouncing back quickly.  🙂

Please continue to pray for steady progress and for our patience with Rudy’s timeline.  His kidney function is holding steady, but will take time to get where it needs to.  As he’s taking breast milk well through his feeding tube, the next milestone will be to get off the ventilator and have the breathing tube removed.