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…

It has been a challenging day getting Rudy’s blood pressure stable after the morning attempt at re-inserting the left chest tube.  He is calm and alert this afternoon and the team has decided not to make another attempt at the chest tube today.  They’ll take another chest x-ray in the morning and see.  The good news is that Rudy’s breathing has remained strong throughout the day.  There hasn’t been a need to up the bpm’s on the ventilator and he is holding steady at 14 bpm.  So we continue to wait, wait, wait.  To break up the monotony, we had a little Halloween fun as you can see.  The pediatric patients on the floor had a costume parade earlier today which Rolf and I attended since Rudy was asleep anyway…it was very sweet and they all had a fun time but it was also heart-wrenching to see the kids parade around with their rolling IV towers, etc…  I couldn’t help but think about Wilson (aka Davy Crockett), Max (aka Jack Sparrow) and Olivia (aka a cowgirl) who are, most likely at this moment, getting dressed for their night of candy collecting!!  Have fun little ones!  We’re looking forward to a family visit tomorrow!!

“Papa” and his mommy Robin…our new friends in the unit who got to go home today!

Our little beanie-boy!  Thanks to Logan’s grandma down the hall, we have another stylish hat with which to charm all the nurses!

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!  🙂

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!

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.

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. 

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.

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…