Wow, today was one of those rare days when the bulk of our family was together in Santa Barbara doing those normal “pre-Rudy” activities.  Rolf took advantage of being home on a Saturday morning and took his kayak out for a little ocean excursion; the kids played nicely together as they experimented with mentos mints and Coca-Cola over at Lake Los Carneros and then headed home to jump on the trampoline; I caught up on some “house business” and began preparing for Max’s big birthday bash tomorrow (he turns 10 on March 10th!); Rolf took the kids to “Lizard’s Mouth” – a nearby hiking area with fun boulders to scramble up and caves to climb in AND Max had a basketball game which our dear friend, Lisa, took him to while the rest of us attended the Santa Barbara Rescue Mission Recovery Program Graduation…always an amazing event that touches us deeply.  Phew, it was a very full day and while we scurried around to all the various activities, little Rudy worked hard on his breathing.  He sprinted with the trach collar for a couple of hours this morning, took a 2 hour rest back on the vent and has been back on the trach collar since 2pm this afternoon.  We’re keeping close tabs on him because this has happened before when he did great out of the gate but tired after a couple of days.  At this point, since we’re stuck waiting for the fluid to stop anyway, we’d be in favor of starting him slow on the ventilator wean.  Speaking of lymphatic fluid, his output is less today so we hope this means the it will stop completely very soon.  We look forward to celebrating Maxi tomorrow afternoon at “Golf ‘n Stuff” and Rolf will head down to be with Rudy after the party.  We’ll be able to give you a more detailed update on Rudy’s condition then.  It sure was hard to leave Rudy yesterday knowing he’d be “alone” for a couple of days, but we are so grateful for the PICU team taking such great care of him and the CTICU team of friends who drop in on Rudy often to let him know he’s not alone!  Bless them all…and you for your continued support from all corners of the world!

 Our little man had a sleepy day…just what the doctor ordered.  With the help of pretty regular doses of meds, Rudy rested all day long.  He even slept through a visit from Daddy!  Rolf arrived at the hospital around 10:30am to see me and Rudy and check in with doctors.  We didn’t do much…in fact, we pretty much sat quietly in Rudy’s room and dozed off a bit but we didn’t have to “do” anything.  It was just great to be together and reassuring for both of us. 

 It was important for Rudy to continue to rest today.  Dr. Judith (this week’s attending) wanted all of Rudy’s energy to go toward the healing of his stomach wound so everything else was put on hold…no vent weaning, no feeds, etc…  They’ll, most likely, give him one more day of rest before starting the wean again.  It’s definitely a balancing act because giving him time to rest is crucial right now but we also don’t want him to rest too long on the vent and lose significant ground on the weaning process.  The GI team is recommending Rudy not be fed through his g-tube for approximately 2 weeks.  This will hopefully give the lymphatic system time to heal and strengthen…after the 2-week break, Rudy will be fed a special formula with virtually no fat for about 6 weeks.  If that goes well, then my milk can be introduced again.  So, we’ve definitely hit a speed bump with the recurrance of this chylous fluid but everyone feels this won’t be as complicated as the chylothorax issue.  We certainly pray this is true.  It’s unclear how long this will delay our homecoming but we knew better than to get too attached to a specific timeline anyway.  The waiting game continues.  For now, I’m praying the fluid draining from his stomach cavity continues to decrease and that tomorrow he will have times of being awake and alert but comfortable at the same time.  Thank you for your continued prayers for patience and healing!!!  Rudy sure is getting quite a reputation as a trouble-maker…charming, no doubt, but a trouble-maker nonetheless.  I keep telling Rudy to get it all out of his system during this hospital stay because I expect life at home to be calm and uneventful!  Ha Ha

One of my favorite Seinfeld moments is Kramer reciting his mantra “serenity now” over and over with increasing frustration.  You know you watch too much t.v. when you find yourself adopting coping mechanisms from a crazy sit-com character.  There were a few times today when I caught myself whispering “serenity now…serenity now” as I struggled to understand the latest twist in Rudy’s journey…

I spent the morning at home finishing up a few house chores, grabbed a quick bite with Rolf on my way out of town (it was “Big Mac” Monday after all) and arrived in L.A. about 1pm.  I hadn’t even set my bags down  before I heard the news…fluid was seeping out of Rudy’s stomach incision.  The pediatric surgical team came up right away to check it, Dr. Shew took one look at it and said he suspected it was chylous ascites…lymphatic fluid that was collecting in the cavity outside the stomach!!!  Yep, for all you avid Rudy’s Beat readers, this is the same fluid that we battled for so long in his chest cavity called chylothorax.  They sent a sample right away to be tested and we got word around 7pm that it is, indeed, chylous!  The wretched monster is back!!!!

Rolf and I have many questions…we and Rudy’s team were so hopeful this was behind us!  It still isn’t clear to me how this will effect the big picture scenario but, for now, they have stopped Rudy’s feeds in hopes of getting the fluid to stop leaking from the incision.  The number one priority right now is to give the incision time to heal.  If the fluid doesn’t stop soon, Rudy will have to go back to the OR to have the incision closed surgically.  The chylous needs to stop completely before they’ll attempt to feed him again.  Unlike the chylothorax fluid, chylous ascites cannot be “fixed” with any surgical procedure.  From what I understand, it is (ONCE AGAIN) a matter of time. 

This is a huge blow…we prepared ourselves for a slow back-and-forth on the feeds as Rudy’s digestive system adjusted AND a fluctuation of the ventilator settings but none of us wanted to suspect that lymphatic fluid would come into play again.  This is particularly troublesome to me because Rudy battled the chylothorax for 8+ weeks!!!!  Are we looking at a similar timeline with the chylous ascites?  The test results came late in the day so we’ll have to sleep with our questions in mind until I have a chance to talk with the doctors involved tomorrow.   “SERENITY NOW!!!”…Can I go up to the helipad and scream it from the very depths of my being???? 

I actually got a very timely birthday gift from Nurse Kristina last week…a little gift book from the hospital gift shop entitled “Serenity”.  I read it cover to cover on Friday and a quote from the book stuck with me all weekend.  The book was compiled by Sarah M. Hupp and in it she writes, “Serenity is found in the deliberate adjustment of our lives to the will of God”.   So true!!  Over and over we’ve had to stop, regroup, readjust our expectations and move forward ONE DAY AT A TIME.  “Deliberate adjustment”, I have learned, is key to finding peace and acceptance in the midst of hardship.  The events of today are asking us to take that truth to yet another level.  Thank goodness God’s mercies are new every morning!