Well, Dr. Bulut gave us the order to be discharged at rounds this morning, I loaded my things in the car and have Rudy’s stroller packed full with medical supplies they are just going to throw out after we leave so we are ready to go, go, go!!!!  I signed the necessary papers and have our updated list of meds…now we’re just waiting for the medical supply folks to arrive with the oxygen.  After a quick training on how to use the equipment, Rudy and I will hit the road and will not stop until we get home (no potty breaks for mommy!!!)  I’m praying for a smooth, quick ride especially as we make our way past the fire area in SB (hoping there isn’t any delay on the 101 Freeway).  I’ll post once we’re safely settled at home.

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!  🙂

A week ago tonight, we were waiting in the ER hoping for the green light to go home…well, we’re still here at UCLA and today was a tough day.  After the episode early this morning, we waited a good bit of the morning for an xray to help determine the next step.  The xray did show some fluid in the lungs…not quite pneumonia but something to address nonetheless.  Dr. Andy wanted to get a picc line in him to get Lasix directly into his vascular system and dry up those lungs but Nurse Anita who puts the picc lines in just wasn’t willing to attempt another picc line in Rudy as she has not had any success with him the last several tries (I don’t blame her).  The alternative was to put a peripheral IV line in but that, too, is not easy to do on Rudy.  Dr. Andy did it himself and ended up putting an IV in one of the prominent veins in Rudy’s stomach area…not a typical place for an IV but it worked.  The only drawback is that it is well within Rudy’s reach and he grabbed onto it with his killer grip and almost pulled it out!  As a result, Nurse Sam had to wrap his torso in netting so he couldn’t grab onto it anymore.  If it weren’t for his buddha-belly physique, he’d look like a member of the “Village People” with his fishnet tank.  He finally settled down about an hour ago after a full day of restlessness and discomfort.  We were all pretty concerned around 4pm this afternoon when his fever spiked to 104 degrees…he was seriously uncomfortable at that point and Nurse Sam had him packed in ice from head to toe.  His fever finally broke and he fell asleep soon after.

Dr. Andy is pretty certain he is battling an infection and ordered a couple of antibiotics as a precaution until the cultures come back.  No matter what it is, it’s clear Rudy’s body fought hard against it all day today and so I pray tonight he is able to sleep soundly and rest up…he sure deserves it.  I love this little boy.

…very sad!  We were so close to going home but at 5am this morning Rudy took a turn for the worse and we are back where we were last week.  He spiked a high fever, battled a heart rate over 220 for a few hours (It’s currently at 203), was put back on the ventilator and we are now waiting for word from Dr. Andy whether or not we can attempt another picc line (Did I mention I’m sad?).  The hardest part is watching him fuss for so long…he hasn’t slept in hours even with the help of Tylenol and 2 methadone rescue doses.  Saint, I mean, Nurse Sam and I gave Rudy a bath which helped calm him a little bit but he’s still pretty restless.  Most likely he caught another virus bug but we’ll have to wait 2-3 days for the cultures to come back to be sure.  So, we wait.  Please pray for the kids today…they were sweet and agreeable yesterday but I’m afraid today’s news could be discouraging (I know it is for Mommy and Daddy…we’re sad).  I’m very grateful for Drs. Andy, Sonal, Mary and Nurse Sam today…if we have to stay, I’m glad we’re in good hands.  I’ll update again later today…