Be Still My Soul!

It’s so funny…on the drive down to L.A. this morning I listened to this hymn over and over thinking “I’m so thankful I’m at peace…things are looking good at UCLA…I’m going to pick up Rudyand get him home, YIPPY, etc, etc, etc”.  Then I walked into Rudy’s room and was met by the charge nurse with the news that Rudy needed to stay for another day of observation because of an episode that happened earlier.  “How could this be?  Rolf just talked to Nurse Courtney and all was ‘a go’!”.  BE STILL MY SOUL…I had to remind myself.  As it turned out, the episode was a particularly disturbing one and I don’t doubt keeping him an extra day was a wise move, it’s just that these curve balls always occur in the 11th hour forcing us to stay which puts Rudy at risk for catching another bug or spiking another fever…it can feel like a vicious cycle sometimes.  “Be still my soul…in every change, He faithful will remain”.

So, apparently this morning around 6:30am Rudy’s sats plunged into the 40s (not uncommon for him) and he became agitated (also not uncommon during his episodes).  The nurse called for help when his eyes rolled back in his head and Dr. Robert (who wasn’t attending on the PICU side but happened to be standing right outside Rudy’s room) responded to her call and began bagging Rudy when he didn’t detect any chest movement.  Ugh!  Now at first I wasn’t too concerned because the desats, agitation and even the eye rolling are all things we’ve seen before and from which he usually recovers pretty quick but the apparent lack of breathing is what concerned the team that rounded this morning and what dc’ed the plan for discharge.

In response, an echo and xray were ordered and both showed that the heart and lungs are clear so there really isn’t any explanation for the low oxygen sats.  From 10am-2pm Rudy sat-ed in the 30s and 40s pretty consistently by 6pm he was sat-ing in the mid-70s and there really wasn’t any difference in the way he looked from one to the other!!!  That’s what is so maddening about it…if it weren’t for the monitor, I wouldn’t know he was in dangerous territory!!!! 

So my prayer this evening is that Rudy’s numbers remain strong throughout the night, that no fever develops and that he will rest comfortably and soundly all night in preparation for discharge TOMORROW.  As of this afternoon, the team ordered to send Rudy home with oxygen.  Our discharge coordinator started working on getting it set up with our medical supply company right away so, prayerfully, the logisitics of all that won’t be what prevents us from going home tomorrow.  Once again, our family was pretty disappointed this afternoon and Rolf and I fear our words are starting to sound pretty empty to the older kids as our claims of “bringing Rudy home today” aren’t materializing.

Of course, watching the news all afternoon kept the goings on here at UCLA in perspective as I watched the community of Santa Barbara ablaze.  We are so grateful that our neighborhood and home aren’t threatened but many of our friends are being evacuated and our prayers are for the hundreds affected by this latest fire storm.  Thank you to the many who called or emailed concerned for our safety…please join us in praying for our community at large.

As always, we’ll keep you posted as tomorrow unfolds…thank you for your support and prayers through this last hospitalization…a harder adjustment after having the little monkey home for a couple of weeks!  🙂

11 thoughts on “Be Still My Soul!

  1. Oh my goodness!

    May all go well so you can all be home together VERY soon. Sleep well Rudy, and no more drama, give your sweet parents a break and some rest big guy.

    We are still praying for you. Thanks for the update before I headed off to bed. I sleep better knowing how to pray for you all….hugs and kisses as always.

  2. “Be still my soul,” indeed. So very, very sorry for yet another set of twisty turns on that Rudycoaster. May you somehow find rest for that ‘still soul’ tonight.

    Do you have a portable fingertip blood sat monitor you can have at home? If you can’t tell by looking at him that his sats are low, how are you supposed to know when to offer oxygen? I do believe you will be qualified to be a PICU nurse yourself when all is said and done. God bless you, God bless Rolf, God bless your Goleta kids and God bless that little guy with the hugely complicated medical history who holds all of our hearts in his tiny hands.

  3. Doctors usually say how they look is most important….But, HLHS is just a little different, a nice way to put it… we know…..hang in there, many prayers being sent you way, for all, Dawn’s Mom

  4. All I can say at this point is that I place all of you in our loving God’s very capable hands. He does have a plan for you in all of this. He loves you very much and he will take care of each and every one of you and especially Rudy.

  5. Trish, I wish I could hug you and pray with you right now. Praying for you from far away. Love, Ann

  6. Wow, I haven’t been paying attention for a few days and what’s going on!? Prayers for Rudy to stablize and get home to his brothers and sister.

  7. Rudy knows about the “Friday” discharge plans on his blog….Hopefully everything will be okay today! I agree a home pulse ox would be very important for you to keep an eye on his sats. Just a thought. Praying for you and praying for the fire victims Love, Cindy

  8. Let’s see, at least you weren’t on your way home when this episode happened. Priase God you were still in the hospital with him. Let’s shoot for discharge again soon. Shhhh let’s not say a day….just soon. Now I know why God always has you on my mind. Daily prayers for my cousins. Love, Cousin Dianna

  9. We’ll be praying for Rudy and the “friday” discharge. Thank you for blessing us with these updates.

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